The barriers and facilitators family caregivers experience when participating in resource-limited hospital care: a qualitative systematic review

Abstract

Background

In many resource-limited settings, understaffed hospitals rely on patients’ families to provide care during admission. These care tasks are often performed informally, untrained and unsupported. The WHO has called for innovative approaches to tackle health worker shortages globally. Family participation interventions could be such an innovation, but current family participation should be understood before implementation. This review explored the barriers and facilitators family caregivers experience participating in resource-limited adult hospital care.

Methods

For this qualitative systematic review, MEDLINE, Embase, CINAHL and the Global Health Library were searched from inception to 17 February 2023. Studies were included if they described experiences of family caregivers participating in hospital-like environments, were performed in a low- or middle-income country and included qualitative data. Open coding was performed, followed by thematic analysis. The risk of bias was assessed using the Joanna Briggs Institute Qualitative Assessment and Review Instrument.

Results

3099 studies were screened, and 16 were included, involving 466 participants. All studies were published between 2009 and 2023. Three studies were performed in Africa, three in South America and 10 in Asia. 13 main themes were identified, seven for barriers and six for facilitators, including 50 subthemes. The main barriers identified were caregiver burden, a discouraging hospital environment, economic burden, ineffective collaboration with health workers, lack of support, sacrificing personal life to care and unpreparedness for caregiving. The main facilitators identified were a caregiving mindset, competence for caregiving, effective collaboration with health workers, encouraging hospital environment, sufficient financial means and supportive caregiving systems.

Discussion

This review presents the first overview of barriers and facilitators experienced by family caregivers participating in resource-limited hospital care. Research in more contexts and among other stakeholders is necessary to comprehend family participation holistically. To improve family participation, this review suggests prioritising educational interventions.

PROSPERO registration number

CRD42023384414.

WHAT IS ALREADY KNOWN ON THIS TOPIC

• Family participation interventions might be the innovative approach The WHO has been looking for to enhance patient care, support family caregivers and tackle health worker shortages globally.

• In many resource-limited settings, understaffed hospitals rely on patients’ families to provide care during admission. However, these care tasks are often performed informally, untrained and unsupported.

• Family participation in hospital care is widespread in practice but underdeveloped and scattered in research, implementation and policy, so before piloting and implementing, current family participation should first be understood.

WHAT THIS STUDY ADDS

• This review presents the first extensive overview of barriers and facilitators experienced by family caregivers participating in resource-limited hospital care.

• Four strategies for improving family participation are suggested: personalised support, increasing resources, implementing educational interventions and underlying these three, recognising family caregivers as an integral part of the healthcare team.

HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY

• Additional contexts and stakeholders should be included in research to understand the barriers and facilitators of family participation contextually and holistically.

• This review suggests prioritising educational interventions, which include caregiver training on basic care tasks, improving collaboration with health workers and increasing (peer-)support systems.

• This review highlights the potential of family participation and paves the road for a community of research, implementation and policy to enhance care, support family caregivers and tackle health worker shortages.

Introduction

In many resource-limited settings, understaffed hospitals rely on the families of patients to provide care during admission. Family participation in hospital care may include washing, toileting, feeding, administering medication and performing wound care. In addition, family caregivers fulfil other indirect care roles, such as decision-making, fetching medications, providing financial support or communicating with health workers about the patient’s condition and treatment. However, these care tasks are often performed informally, untrained and unsupported, resulting in a high mental and physical burden of care and unknown effects on patient outcomes.1,12

One of the reasons for this widespread informal family participation in hospital care is the growing global shortage of health workers. By 2030, the WHO predicts a deficit of 10–18 million health workers worldwide, especially in resource-limited settings.13,16 With this growing deficit, there is an urgent need for innovative approaches to tackle health worker shortages and ensure access to quality care.¹⁷

Besides training and retaining more health workers, formalising family participation in hospital care could provide an additional solution. By recognising, training and supporting family caregivers, there is a potential to enhance and personalise patient care, prepare and support family caregivers for caregiving roles in and outside the hospital, alleviate overburdened health workers’ workload and ultimately build more sustainable health systems in resource-limited and resource-rich settings.¹⁸

While limited evidence suggests that formalised family participation interventions in resource-limited hospital care are safe and can enhance patient outcomes,¹⁸ further research is essential to explore the potential effects of these interventions on patients, family caregivers, health workers and health systems.

Prior to designing, piloting and implementing family participation interventions, there is a need to understand current informal family participation and an opportunity to learn from it. This review aimed to identify, appraise and synthesise qualitative data on the barriers and facilitators family caregivers experience when participating in resource-limited hospital care for adult patients.

Methods

Protocol and registration

A study protocol for this qualitative systematic review was created following the guidelines stated by Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA)¹⁹ and Butler et al.²⁰ The review was registered in PROSPERO on 26 September 2023.²¹

Definitions

Family participation

The field of family participation research is largely undefined. Many seemingly synonymous terms have been used in publications to refer to overlapping and distinctively different concepts and definitions. No consensus exists on the definitions of these terms. This review defines the term ‘family participation’ as the participation of any family member, close relative or friend in delivering hospital care by executing physical care tasks for a hospitalised relative, such as feeding, administering medication and wound care.

Barriers and facilitators

In this review, a barrier is defined as an obstacle of any kind that negatively influences the possibility of a family caregiver to participate in the care of a hospitalised patient. In contrast, a facilitator is a factor of any kind that positively influences the possibility of a family caregiver to participate in the care of a hospitalised patient.

Eligibility criteria

Types of studies

All qualitative or mixed methods studies describing the experiences of family caregivers regarding their participation in the hospital care of their admitted relative were included. Studies solely presenting quantitative data were excluded. In addition, letters, correspondence, conference papers and unpublished data were excluded. Publications unavailable in English, French or Dutch were excluded. A study was also excluded if the full text was unavailable from online databases.

Types of participants

Only caregivers with a personal connection to the patient they cared for in the hospital were included, for instance, a family member or friend. In some societies, the extended family does not involve direct family ties but does contribute strongly to the ‘family’ structure in that culture. Hired or volunteered caregivers without a personal connection to the patient were excluded. Due to regional variations in the definition of ‘adult’, we included caregivers of patients admitted to the adult ward aged 16 years and above. Only caregivers of patients admitted for more than 24 hours were included to ensure the experiences were not based on a single instance of care participation.

Types of environments

Studies describing the caregivers’ experiences participating in a hospital-like environment, such as hospitals, nursing homes and hospices, were included. Home care settings were excluded. Furthermore, according to The World Bank definitions, this review included studies in resource-limited settings, defined as low-income, lower-middle-income and upper-middle-income countries.²² Studies in high-income countries were excluded.

Information sources and search

An experienced clinical librarian (RS) built the search using the keywords ‘family’, ‘caregiver/family participation’, ‘perceptions’, ‘hospital-like environment’ and ‘resource-limited setting’. The search was expanded using synonyms or database tools such as Medical Subject Headings (MeSH). The Global Health Library, Embase, MEDLINE and CINAHL were searched from inception to 17 February 2023. The full searches can be found in online supplemental file 1.

Study selection

Two reviewers (JDvW and JJD) independently screened the retrieved articles on title, abstract and full-text, subsequently using Rayyan.²³ At all stages, disagreements were resolved by discussion and consensus between JDvW and JJD and a third reviewer (MvV).

Data collection

Study characteristics and family caregiver characteristics were collected by one reviewer (JDvW) and checked by a second reviewer (JJD).

Coding

Open coding was performed following a general inductive approach.²⁴ Text segments related to the experiences of family caregivers participating in hospital care were coded. For each article, the results and discussion sections were coded to find first-order constructs (participants’ quotes) and second-order constructs (researcher interpretation, statements, assumptions and ideas).²⁵ JDvW initially coded all articles; subsequently, JJD expanded the coding for all articles. Coding disagreements were resolved through discussion with JDvW, JJD and MvV. MAXQDA software facilitated the coding process.²⁶

Risk of bias

The Joanna Briggs Institute Qualitative Assessment and Review Instrument was used to examine the risk of bias and methodological quality of the included studies.²⁷ Critical appraisal was performed by one reviewer (JDvW) and checked by a second reviewer (JJD). Any differences in findings were discussed with the third reviewer (MvV).

Data synthesis

A thematic synthesis method was used to analyse and report themes within the data. Thematic analysis was chosen to create an overview of common elements across otherwise heterogeneous studies.^{28 29} During coding, both reviewers (JDvW, JJD) assigned codes, the experiences of family caregivers, to either the barriers or facilitators category. After coding, descriptive themes (subthemes) were first formed, followed by the analytical (main) themes. For the first round of thematic synthesis, the intention was to keep the themes as close to the original data as possible. In the subsequent formation of analytical themes, descriptive themes were interpreted to form overarching themes. Two reviewers (JDvW and JJD) spent multiple sessions rereading all articles and bundling codes that shared similarities to descriptive themes. Themes and codes constantly changed during this process due to new codes being added, shifted or removed from a theme. When a code segment was multi-interpretational or lacked context, and thus needed heavy subjective interpretation from the reviewer, the code segment was excluded from thematic synthesis. The formation and changing of themes were done through discussion and consensus among the two reviewers (JDvW and JJD). If uncertainty or disagreement remained, the third reviewer (MvV) was involved in the discussion to reach a consensus. No predetermined framework was used to form themes. The formation of themes was not based on the amount of codes found but on the importance and uniqueness of themes.

Authors’ reflexivity

We considered our views, opinions and positions on family participation and healthcare as possible influences on the study design and conduct, including the research question, search strategy, eligibility decisions, coding, data synthesis and interpretation of the findings. During each step, discussion was encouraged on potential influences and made them an explicit part of the review process. Throughout the review process, we discussed our position as healthcare professionals employed in a resource-rich setting, accompanied by its values and norms.

The author team consisted of three medical doctors (JJD, SJL and MvV), one nurse and medical student (JDvW), one clinical librarian (RS) and a public health professional (CA). All authors are employed at Amsterdam UMC, an academic hospital in the Netherlands. Three authors grew up in resource-limited settings, and three in the Netherlands. All authors have extensive work experience in resource-limited settings and hospitals around the world. In addition, multiple authors have personal experience with family caregiving in resource-limited and resource-rich settings.

Patient and public involvement

Patients and the public were not involved in the design, conduct, reporting or dissemination of this research.

Results

Study selection

The search retrieved 3754 records. After deduplication, 3099 records were screened on title and abstract, and subsequently, 104 articles on full text. Of those, 16 articles met the eligibility criteria and were included in the qualitative analysis.30,45 A PRISMA flow diagram, generated using PRISMA 2020⁴⁶, can be found in figure 1, and a detailed list of studies excluded during full-text screening can be found in online supplemental file 1.

Figure 1. Preferred Reporting Items for Systematic Reviews and Meta-Analyses flow diagram. LMIC, low-income and middle-income country.

Study characteristics

All included studies were published between 2009 and 2023. Three studies were performed in Africa, three in South America and 10 in Asia. The articles had similar objectives, primarily focusing on family caregivers’ experiences, perceptions, and roles in hospital care. Four studies had a mixed-method study design, while 12 studies had a qualitative study design. All studies included a form of interview such as in-depth, semistructured, focus group and open-ended question survey interviews. In addition to focusing on family caregivers, nine studies also included health workers and four included patients in their study population. Two studies described the same study population.^{34 37} All studies were conducted in clinical hospital settings across various wards. Most studies were performed in tertiary or teaching-level hospitals. The characteristics of the included studies are presented in table 1.

Table 1. Characteristics of the included studies.

Author	Publication year	Country	Design	N* (466)	Study population†	Care setting
Amiresmaili and Emrani30	2018	Iran	Qualitative: semistructured interviews	9	Informal caregivers and nurses	Unspecified hospital wards; teaching hospitals of Kerman University of Medical Sciences
Babaei and Abolhasani31	2020	Iran	Qualitative: interviews and observations	8	Family members, nurses and patients	Cardiac special units; teaching hospitals of Isfahan University of Medical Sciences
Bhattacharyya and Chopra Chatterjee32	2019	India	Qualitative: interviews and observations	54	Family caregivers	All hospital wards (caregivers of elderly patients); tertiary public hospital in Kolkata
Bilgin et al33	2022	Turkey	Embedded mixed method: semistructured interviews supported by follow-up surveys	21	Family caregivers	Medical oncology unit; training and research hospital in Ankara
Ho et al‡34	2021	Vietnam	Qualitative: focus groups and in-depth interviews	20	Family caregivers and healthcare providers	Oncology wards; two national oncology hospitals in Hanoi and Ho Chi Minh City
Hoffman et al35	2012	Malawi	Mixed method: in-depth interviews and semiqualitative questionnaires	60	Guardians, nurses, physicians and hospital administrators	Male medicine, obstetrics, paediatric and ophthalmology in-patient wards; Kamuzu Central Hospital (referral hospital)
Jafarpoor et al36	2020	Iran	Qualitative: semistructured interviews	9	Family members and healthcare providers	Intensive care units; 12 units in teaching hospitals in two cities in Iran
Jenkins et al‡37	2021	Vietnam	Qualitative: focus groups and in-depth interviews	20	Caregivers and healthcare providers	Oncology wards; two national oncology hospitals in Hanoi and Ho Chi Minh City
Kehali et al38	2020	Ethiopia	Qualitative: in-depth interviews	12	Family members	Intensive care units; six hospitals in Addis Ababa (two public, one missionary and three privately owned)
Magagnin and Heidemann39	2019	Brazil	Qualitative: participant meetings	16	Family caregivers	Stroke unit; municipal public hospital in Joinville
Nayeri et al40	2013	Iran	Qualitative: semistructured interviews	6	Family members, nurses and elderly patients	Unspecified elderly wards; two teaching hospitals in Tehran
Park et al41	2022	Bangladesh, Indonesia, South Korea§	Qualitative: semistructured interviews	12	Family carers, healthcare workers and patients	General wards; five tertiary level hospitals
Pena and Diogo42	2009	Brazil	Qualitative: interviews using an adapted instrument	30	Caregivers, nursing team members	Unspecified medical clinic units; tertiary trauma hospital in Marilia
Roberts et al43	2021	Argentina	Qualitative: direct observations and semistructured interviews	9	Caregivers	Neurology intensive care unit; private teaching hospital in Buenos Aires
Sadigh et al44	2016	Uganda	Mixed method: face-to-face interviews using a survey tool with open and closed questions	100	Informal caregivers	Internal medicine wards; Mulago National Referral Hospital
Sharma et al45	2014	India	Mixed method: cross-sectional survey and in-depth interviews	100	Family caregivers and patients	Preoperative and postoperative neurosurgery wards; tertiary care hospital in Chandigarh

^*Number of caregivers included in the qualitative part of the study; other participants were not counted in this table.

^†All types of participants reported in the study; however, only the perspectives of family caregivers were collected for this review.

^‡These studies involve the same population and will be counted only once.

^§South Korea is a high-income country; thus, findings related to South Korea were excluded from this review.

Family caregiver characteristics

In most studies, the majority of caregivers were women. However, three studies reported a male majority.^{31 36 45} Other family caregiver characteristics were more heterogeneous between studies, such as age, relation to the hospitalised relative, level of education and duration of hospitalisation. One study did not provide any details on sociodemographics, only stating the duration of hospitalisation.⁴⁰ Detailed family caregiver characteristics are presented in table 2.

Table 2. Family caregiver characteristics.

Authors	Country	Patient group	N* (466)	Age†	Sex†	Relationship to hospitalised relative†	Level of education†	Duration of hospitalisation
Amiresmaili and Emrani30	Iran	Unspecified	9	25–55	F: majority	–	–	–
Babaei and Abolhasani31	Iran	Cardiology	8	24–48	F: 37.5%	Sp: 12.5%; C: 62.5%; Si: 25.0%	Prim: 12.5%; Sec: 50.0%; Tert: 37.5%	3–10 days
Bhattacharyya and Chopra Chatterjee32	India	Elderly	54	18–34: 30%; 35–50: 52%; 50+: 18%	F: 59%	Sp and C: 88%; Si and O: 12%	No edu: 8%; Sec: 42.5%; Tert: 49.5%	>10 days
Bilgin et al33	Turkey	Oncology	21	27–70	F: 57.1%	Sp: 47.6%; P: 14.3%; C: 23.8%; Si: 14.3%	Prim: 61.9%; Sec: 14.3%; Tert: 23.8%	–
Ho et al‡34	Vietnam	Oncology	20	29–72	F: 65%	Sp, P, C, Si: all direct family member (except one participant)	–	–
Hoffman et al35	Malawi	Medicine, obstetrics, paediatric, and ophthalmology	60	15–63 (median: 37.8)	F: 83%	Sp: 15.0%; P: 53.3%; C: 8.3%; Si: 15.0%; O: 8.5%	No edu: 72.0%	5–14 days
Jafarpoor et al36	Iran	Intensive care	9	27–67	F: 22.2%	Sp: 11.1%; P: 11.1%; C: 44.4%; Si: 33.3%	No edu: 11.1%; Prim: 11.1%; Sec: 22.2%; Tert: 55.5%	>1 week
Jenkins et al‡37	Vietnam	Oncology	20	29–72	F: 65%	Sp, P, C, Si: all direct family member (except one participant)	–	–
Kehali et al38	Ethiopia	Intensive care	12	32–52	F: 66.7%	Sp: 33.3%; P: 16.7%; C: 25.0%; Si: 16.7%; O: 8.3%	Prim: 16.7%; Sec: 41.7%; Tert: 41.7%	>2 days
Magagnin and Heidemann39	Brazil	Stroke	16	20–40: 56.3%; 41–60: 18.8%; 60+: 25.0%	F: 100%	Sp: 31.3%; C: 56.3%; O: 12.5%	No edu: 37.5%; Prim: 12.5%; Sec: 31.3%; Tert: 18.8%	1–9 weeks
Nayeri et al40	Iran	Elderly	6	–	–	–	–	>2 days
Park et al41	Bangladesh, Indonesia, South Korea§	Unspecified	12	–	–	–	–	>1 day
Pena and Diogo42	Brazil	Unspecified	30	20–70 (mean: 48.8)	F: 90%	Sp: 16.7%; C: 56.7%; Si: 3.3%; O: 23.3%	–	>2 day
Roberts et al43	Argentina	Neurology intensive care	9	–	F: 66.7%	Sp: 33.3%; P: 33.3%; C: 11.1%; Si: 11.1%; O: 11.1%	–	>1 day
Sadigh et al44	Uganda	Medicine	100	Average: 37	F: 71%	–	–	–
Sharma et al45	India	Pre and post neurosurgery	100	<20: 3%; 20–40: 66%; 40–60: 26%; 60+: 5%	F: 24%	Sp, P, C, Si: 71.0%; O: 29.0%	Prim: 25%; Sec: 41%; Tert: 34%	–

^*Number of caregivers included in the qualitative part of the study; other participants were not counted in this table.

^† Due to heterogeneity in reporting, data is represented as reported in the study.

^‡These studies involve the same population and will be counted only once.

^§South Korea is a high-income country; thus, findings related to South Korea were excluded from this review.

C, child; F, female; No edu, no former education, incomplete education or illiteracy; O, other; P, parent; Prim, primary education; Sec, secondary education; Si, sibling; Sp, spouse; Tert, tertiary education.

Critical appraisal

14 studies were appraised as high, one as moderate and one as low quality, and thus, there was a high risk of bias for this particular study. Only three studies located the researcher culturally or theoretically, and only two studies reported the researcher’s influence on the research and vice versa. Of those, only one study reported on both. The detailed critical appraisal findings are presented in table 3.

Table 3. Joanna Briggs Institute Qualitative Assessment and Review Instrument assessment of methodological quality.

Author	Q1	Q2	Q3	Q4	Q5	Q6	Q7	Q8	Q9	Q10	Quality
Amiresmaili and Emrani30	Y	Y	U	Y	Y	N	N	Y	Y	Y	High
Babaei and Abolhasani31	Y	Y	Y	Y	Y	N	Y	Y	Y	Y	High
Bhattacharyya and Chopra Chatterjee32	Y	Y	Y	Y	Y	N	U	Y	Y	Y	High
Bilgin et al33	Y	Y	Y	Y	Y	N	N	Y	Y	Y	High
Ho et al34	Y	Y	Y	Y	Y	Y	U	Y	Y	Y	High
Hoffman et al35	Y	Y	Y	U	Y	N	N	Y	Y	Y	High
Jafarpoor et al36	Y	Y	Y	Y	Y	N	N	Y	Y	Y	High
Jenkins et al37	Y	Y	Y	Y	Y	N	U	Y	Y	Y	High
Kehali et al38	Y	Y	Y	Y	Y	Y	Y	Y	Y	Y	High
Magagnin and Heidemann39	Y	Y	Y	Y	Y	N	U	Y	Y	Y	High
Nayeri et al40	Y	Y	Y	Y	Y	N	U	Y	Y	Y	High
Park et al41	Y	Y	Y	Y	Y	U	N	Y	Y	Y	High
Pena and Diogo42	U	Y	U	U	Y	N	N	U	Y	U	Low
Roberts et al43	Y	Y	Y	Y	Y	Y	U	Y	Y	Y	High
Sadigh et al44	Y	Y	Y	Y	Y	N	N	Y	U	Y	High
Sharma et al45	Y	Y	Y	N	U	N	N	Y	Y	Y	Moderate

N, no; U, unclear; Y, yes.

Review findings

The findings were divided into barriers and facilitators. 13 main themes (analytical) were formed, seven for barriers and six for facilitators. Under these main themes, 50 subthemes (descriptive) were found, 35 for barriers and 15 for facilitators. These themes were formed from analysing 582 code segments, 471 for barriers and 111 for facilitators. A brief overview of the themes for barriers and facilitators can be found in tables4 5, respectively. An extended overview of the themes, including quotes, can be found in online supplemental file 1. Additionally, online supplemental file 4 offers an overview detailing the number of studies and code segments supporting each main and subtheme.

Table 4. Overview of barriers: main themes and subthemes.

Main theme	Subthemes
Caregiver burden	Emotional burden
	Physical burden
Discouraging hospital environment	Absent or counterproductive hospital rules
	Exposure to distress
	Insufficient and inaccessible caregiving supplies
	Lack of amenities
	Overcrowding
	Travel distance hospital
	Unfamiliarity with surroundings
	Unsafe hospital environment
Economic burden	Expenses due to hospitalisation
	Lack of available financial resources
	Lack of financial support
Ineffective collaboration with health workers	Dysfunctional relation with health workers
	Lack of confidence in the healthcare system
	Lack of health worker training
	Lack of time of health workers
	Language barrier
	Limited information sharing
	Poor communication
	Staff shortages
	Unwillingness to care
Lack of support	Absent collaboration with other family caregivers
	Insufficient collaboration within the family
	Societal judgement
	Unrecognised and unclear role
Sacrificing personal life to care	Changing patient–caregiver relation
	Prioritising caregiving over personal life
	Unable to combine home and caregiving responsibilities
	Unable to combine work and caregiving
Unpreparedness for caregiving	Lack of training
	Lack of understanding
	Limited knowledge
	Limited prior skills
	Low literacy

Table 5. Overview of facilitators: main themes and subthemes.

Main theme	Subthemes
Caregiving mindset	Commitment
	Coping
	Duty to care
	Strong patient–caregiver bond
Competence for caregiving	Information sharing
	Learning to participate in care
	Prior caregiving experience
Effective collaboration with health workers	Approachability of health workers
	Health workers facilitate family participation
Encouraging hospital environment	Caregiving amenities
	Supportive hospital rules
Sufficient financial means	Ability to combine work and caregiving
	Financial support
Supportive caregiving systems	Caregiving support within the family
	Peer support from other family caregivers

Barriers

The findings on barriers were organised into seven main themes, each supported by a minimum of nine and a maximum of 14 articles.

Caregiver burden

Caregiver burden emerged as a predominant barrier in 13n studies, impeding family caregivers’ participation in hospital care. The code segments under emotional burden were characterised by a spectrum of emotional responses caregivers experienced while providing care, including anxiety, irritation, hopelessness, loneliness, stress, fear of loss, sadness or overwhelming. Likewise, caregivers reported physical burdens such as sleep deprivation, fatigue, decline in their own physical health and physical pain, all directly attributed to the demands of caregiving.

Discouraging hospital environment

Another theme supported by almost all studies, 14 out of 16, is the discouraging hospital environment to participate in care. Eight subthemes highlight different aspects of this discouragement. In the first place, family caregivers struggle to access the hospital due to the travel distance from their home. When in and around the hospital, the surroundings can be unfamiliar to the caregiver, leading to getting lost in the hospital or a new city and not knowing where to get supplies. In addition to this, absent or counterproductive hospital rules can add to the confusion, for instance, by restricting visiting hours while expecting caregivers to be available at all times or a lack of rules leaving unclear when and where caregivers should be involved in their relative’s care, leaving care participation open to the interpretation of the caregiver and the rotating team of health workers. While participating in care, caregivers mention a lack of basic amenities, including absent sleeping areas, heat, running water, sanitary conditions, mosquito nets and privacy. In the same light, caregivers mention the overcrowding of the ward with patients and caregivers as impeding their caregiving. Furthermore, caregiving is complicated by insufficient and inaccessible caregiving supplies. Caregivers described limited availability of drugs, diagnostics or equipment at the hospital, requiring caregivers to find such resources outside the hospital, if available at all. Finally, safety concerns, including a lack of infection control and concerns about personal safety and their belongings, made family caregivers experience the hospital environment as unsafe.

Economic burden

Economic burden emerged as a barrier with three subthemes supported by nine studies. First, the studies described the high expenses and debt related directly or indirectly to hospitalisation, for instance, medication and diagnostics, but also for travel, food or lodging. Family caregivers frequently mentioned the unavailability of financial resources to cover these expenses, influencing their decisions in the care process due to insufficient funds or high out-of-pocket costs. Finally, the studies cited a lack of financial support structures to cover the spike in expenses due to hospital admission.

Ineffective collaboration with health workers

Ineffective collaboration with health workers emerged as a significant barrier to family participation, supported by 13 articles and divided into nine subthemes. First, family caregivers struggled to access health workers due to staff shortages and lack of time health workers had to interact with caregivers. When communicating with health workers, caregivers expressed poor or inadequate communication as a barrier to participating in their relative’s care. Many studies reported limited information sharing from health workers to caregivers as a barrier, for example, infrequent, unclear or incomplete updates on the patient’s condition or limited caregiving advice. When interacting with nurses, doctors and support staff, caregivers also described dysfunctional relations. Caregivers described being mistreated, threatened or disrespected by health workers, fearing the health workers and thus not asking for help. In addition, it was reported that health workers do not understand the role of family caregivers and their sacrifice. One study described a lack of training for nurses on family participation as a barrier. In some studies, the family lacked the trust in the healthcare system to participate in care. In some other cases, family caregivers were unwilling to care for their relatives, mostly because they believed it should be the nurse’s responsibility. Finally, one study mentioned that language barriers also hindered effective collaboration.

Lack of support

13 studies identified a lack of support as a barrier. This theme comprises four subthemes. Within their family structure, some family caregivers experienced a lack of support. For example, the caregiving responsibility came down to one person, family conflict rose, information gaps arose when caregivers switched, or there was a lack of understanding for caregiving from the rest of the family. In addition, societal judgments, including caregiving expectations, shame for caregiving circumstances and a social distance from society, lead to family caregivers experiencing a lack of support for their caregiving. Within the hospital, many studies described family caregivers’ unrecognised and unclear role as a major barrier to participation in care with no permission to participate, lack of respect from health workers, no formal support, caregiving not seen as an integral part of patient care or a wide range of views on family involvement in care from health workers. Two studies also mentioned the absence of collaboration with caregivers of other patients on the ward due to limited time or the attitude of other family caregivers as a barrier.

Sacrificing personal life to care

The need for family caregivers to sacrifice their personal lives to provide care was reported in 10 studies comprising four subthemes. First, family caregivers faced challenges in combining caregiving with their home responsibilities. The caregiving role consumes time and effort, sometimes far away from home, leading to caregivers being unable to balance it with their role in the household or community. In line with the previous subtheme, caregivers reported that they cannot balance caregiving with work commitments. This sometimes resulted in job loss or their business suffering, leading to a loss of income for the household. Third, changes in the caregiver-patient relationship, sometimes even resulting in conflict, also contributed to the experience of sacrificing personal life for caregiving. Finally, caregivers expressed that the caregiving demands often led to prioritising caregiving over personal life.

Unpreparedness for caregiving

A barrier identified across 14 studies was the unpreparedness of caregivers for their roles in hospital care, supported by five subthemes. Limited caregiving knowledge and prior skills were experienced as barriers to knowing what, when and how to provide care. Family caregivers also described a lack of training in the hospital to equip them for caregiving. In addition, inadequate understanding of the medical environment and low literacy rates collectively hindered effective caregiving participation.

Facilitators

The findings on facilitators encompass six main themes, each supported by a minimum of two and a maximum of 14 articles.

Caregiving mindset

14 articles describe a caregiving mindset facilitating care participation, stemming from four subthemes. A strong and unique bond between patient and their caregiver was mentioned as a facilitator, as patients feel most comfortable with their family member, and caregivers best understand their admitted relative. On top of this, family caregivers reported a cultural and family duty to care. Besides duty, caregivers felt a commitment to the care of their relative. Caregivers want to contribute to their relative’s recovery, have a strong willingness to help and feel fulfilled by providing care. Finally, effective coping mechanisms, such as religious practices, accurate planning, adaptation to the caregiving role and increased morale from the improvement of the patient’s condition, facilitated care participation.

Competence for caregiving

Eight studies described competence for caregiving as a facilitator. Some caregivers reported adequate information sharing with regular updates and information about the patient’s condition, and advice on caregiving from health workers, which added to a feeling of competence. One study reported the contribution of prior caregiving experience and knowledge to participate in care with more ease. Some studies reported that acquiring new skills and knowledge contributed to easier hospital care participation.

Effective collaboration with health workers

The effective collaboration with health workers’ facilitator was formed from two subthemes in seven studies. First, caregivers reported approachable health workers to improve their participation in care, for instance, feeling comfortable asking questions, having positive interactions with health workers and feeling safe in interactions with health workers. Family caregivers also reported that it is easier to participate in care when health workers facilitate the participation. In those cases, family caregivers describe collaborating with health workers and health workers to relieve the pressure of caregiving.

Encouraging hospital environment

Three studies noted the presence of a supportive hospital environment as a facilitator for family participation. Caregiving amenities, such as a guardian shelter or clean and spacious wards, and hospital rules, including open visiting hours, enhance family caregivers’ participation.

Sufficient financial means

Two studies highlighted the availability of sufficient financial means as a facilitator. Financial support through donations or borrowing money and the ability to combine work and caregiving tasks were identified as subthemes to support family caregivers in the caregiving process.

Supportive caregiving system

In eight studies, a supportive caregiving system emerged to facilitate family caregivers’ participation in care. Two studies highlighted the collaboration between caregivers of different patients, such as mental support or monitoring their relative when they are gone. Seven studies described effective support within family structures, such as sharing and dividing responsibilities and tasks among various family members.

Discussion

Summary of findings

Our review analysed 16 qualitative or mixed methods studies focusing on the barriers and facilitators faced by family caregivers in resource-limited adult hospital care.

We identified seven main barriers and six main facilitators. Barriers encompassed emotional and physical burdens on caregivers, a discouraging hospital environment, economic burden, ineffective collaboration with health workers, lack of support, sacrificing personal life for caregiving and unpreparedness for caregiving. Conversely, facilitators included a caregiving mindset, caregiving competence, effective collaboration with health workers, encouraging hospital environment, sufficient financial means and supportive caregiving systems.

In relation to existing literature

To our knowledge, this is the first systematic review to focus on the barriers and facilitators experienced by family caregivers in resource-limited hospital care.

Recently, Hogan et al provided a detailed description of the experiences of informal caregivers in low-income and middle-income countries based on qualitative literature.⁴⁷ Although not primarily focused on barriers and facilitators, Hogan et al’s three main themes to describe informal caregivers’ experiences resonate with the barriers described in our review: (1) the unwelcome but tolerated guest, (2) enduring personal sacrifice and (3) fulfilling familial obligations.

There is no overview of barriers and facilitators similar to our review in related research fields. However, individual studies conducted in home settings, paediatric care and high-income settings report similar barriers to those found in this review.48,58 Contextual and stakeholder differences, such as caring at home, the dependence of a child on their parents or fewer staff shortages, influence the barriers and facilitators experienced by family caregivers.

In most literature, and among the articles included in this review, barriers are reported more than facilitators. This disparity might be due to a negativity bias of caregivers, the emphasis of research on barriers or burden, or the prevailing informal nature of caregiving, which often entails encountering more barriers than facilitators.

Interpretation

In our overview, we observed barriers and facilitators to be interconnected, with some being opposites. We speculate that one could address barriers and facilitate care participation through personalised support, increasing resources, implementing educational interventions and underlying these three, recognising family caregivers as an integral part of the healthcare team. Figure 2 details the connections between barriers and facilitators and which themes might benefit most from what strategy.

Figure 2. Connections between barriers and facilitators, and potential strategies to implement.

Personalising support involves tailoring to the needs of an individual caregiver. Understanding the influence of different stakeholders, such as patients, health workers, hospital administrators and family structures, and the contexts caregivers operate in, such as the ward, hospital, home or society, enables support personalised to the unique factors influencing caregivers. Personalising support might benefit all barriers found in this review, but caregiver burden and sacrifice might especially benefit from a personalised approach since they are highly dependent on personal factors.

Increasing resources for care participation might alleviate the economic burden and facilitate an encouraging hospital environment. The needed resources are a financial investment in hospital amenities, supplies and staff, and support systems for the financial stability of patients and family caregivers.

Educational interventions might support and prepare caregivers to participate in care and foster effective collaboration with health workers. In addition, educational interventions for health workers might also be needed to prepare them for family participation.

Finally, recognising family caregivers as part of the healthcare team underpins these strategies. A shared understanding and expectation of family participation should be fostered among caregivers, patients, health workers, hospital administrators, family structures and society to improve family participation. Otherwise, family participation will remain informal and unsupported, with its potential untapped.

Implications for research and practice

To support caregivers, enhance care and tackle health worker shortages, more research is needed to comprehend and improve family participation in resource-limited hospital care.

Understanding family participation

Additional contexts and stakeholders should be included in research to understand the barriers and facilitators of family participation. More contexts would enhance understanding of which barriers and facilitators are context specific or context overarching. Additional stakeholders, such as patients, health workers, hospital administrators and family structures, would provide a more holistic understanding of family participation.

Improving family participation

Personalised support is time intensive, and increasing resources requires investment, both of which are difficult in resource-limited settings. Therefore, we suggest prioritising educational interventions through which recognition of family participation can also be built. Subsequently, if family participation is recognised and proves to be (cost)effective, further financial and time investments can be made.

Prepare family caregivers to participate in healthcare

Our review revealed that family caregivers often lack the necessary knowledge and skills for performing basic care tasks. Addressing this gap could involve implementing educational interventions to train family caregivers in various aspects of patient care during hospital stays. These training sessions could cover essential practices such as hygiene protocols, feeding techniques, wound care and medication administration. Tailoring these interventions to the specific context and the level of family involvement allowed in care settings is crucial. Additionally, initiatives to enhance health literacy among caregivers would complement these efforts.

Improve effective collaboration with health workers

Collaboration between family caregivers and healthcare workers can be both a challenge and an opportunity. Clearly defining roles and responsibilities can legitimise family participation and potentially alleviate the workload for healthcare workers. Training nurses on facilitating family involvement could enhance their sense of ownership and commitment to collaboration. Improving regular updates and information sharing by healthcare professionals can also promote family participation. These interventions could also help health workers and caregivers recognise each other as mutual partners in the care process.

Provide systems for (peer-)support

Feeling supported is essential for family caregivers’ participation in healthcare. Formalising permission for caregivers to be present on the ward and participate in healthcare activities could significantly enhance their sense of support. However, this may be subject to local regulations and policies. Establishing robust support systems inside and outside the hospital environment is essential for fostering a supportive culture for family caregivers. Peer support may be reached through training initiatives for family caregivers in group settings.

Limitations of the study

Our review acknowledges the inherent challenge of capturing all available perspectives of family caregivers. Several factors contribute to this limitation, including the undefined nature of the field and syntax of family participation research, the publication of studies in languages other than English, under-reporting and the occasional presentation of perspectives as incidental findings within broader studies. Additionally, while informative, quantitative findings were excluded from this review due to their limited suitability for capturing subjective experiences. Despite these potential gaps, our review offers a comprehensive and systematic approach grounded in the lived experiences of family caregivers.

Furthermore, it is essential to recognise the context-specific nature of barriers and facilitators to family caregiver participation. This complexity presents challenges in specifying which findings apply to particular settings and which transcend contextual boundaries. Moreover, in studies involving multiple participant groups, distinguishing whether a finding reflects a caregiver perspective or another stakeholder’s viewpoint poses an additional difficulty, particularly in second-degree interpretations.

At last, the themes identified in our review emerged directly from the data without optimisation or restructuring into a predetermined framework. While this approach ensures a close alignment with the experiences of family caregivers, it may not always result in the most organised or logical presentation of barriers and facilitators.

Conclusion

This review analysed qualitative data to provide an extensive overview of barriers and facilitators experienced by family caregivers in resource-limited adult hospital care. From this overview, we identified potential areas for future research. Research in more contexts and among other stakeholders is necessary to comprehend family participation contextually and holistically. To improve family participation, we suggest prioritising educational interventions, which include caregiver training on basic care tasks, improving collaboration with health workers and increasing (peer-)support systems. Family participation might potentially address the WHO’s priorities to enhance patient care, support family caregivers and tackle the worldwide health worker shortages.

Data availability statement

Data are available on reasonable request.