Support and Its Effect for Persons Affected by COPD and Their Next of Kin - an Systematic Integrative Review

Introduction

Chronic obstructive pulmonary disease (COPD) is a long-term, irreversible lung condition for which there is currently no cure.^1,2 COPD is the third leading cause of death worldwide, with 3.23 million people dying from COPD in 2019. Persons with COPD experience reduced lung function, and the severity of the disease is classified using the GOLD stages 1–4 and categories A-E COPD.¹ Living with COPD affects not only those diagnosed but also their family members, leading to a significant symptom burden for the individuals and a caregiver burden for their loved ones.³ The symptom burden impacts the daily lives of people with COPD, affecting their ability to work, engage in leisure activities, and participate in social events.⁴ For family members, caring for someone with a chronic illness often results in increased stress and can be exhausting. A caregiver burden arises when there is an imbalance between stressors and the resources available to cope with those stressors.⁵ This burden is related to self-perception and is multifaceted. Over time, it encompasses financial challenges, conflicts arising from multiple responsibilities, and a lack of social activities. As a result, caregivers may experience negative consequences, including reduced quality of care, a decline in their quality of life, and deterioration in both physical and psychological health.⁶ The next of kin can be family members, friends, neighbors, and et.al from the workplace. The persons with COPD selected these individuals to provide support.⁷ Support is guidance, help, and understanding from a physical, psychological, and social perspective. A prerequisite for providing support is an understanding and confirmation of people with COPD situations and a sense of sympathy.^8,9 Many interventions and lung programs have been developed. However, most lung programs are primarily focused on disease treatment^10,11 and physical activity,^12,13 and the activities are directed to the person affected by COPD.^14,15 There is currently limited knowledge about the role and needs of next of kin in the context of COPD. When developing effective healthcare interventions, it is crucial to assess existing interventions and programs and evaluate their effectiveness. This study seeks to answer several key questions: What support is available to individuals affected by COPD? What support is provided to their next of kin? How do both the affected individuals and their next of kin perceive and value the support they receive?

This systematic integrative review aims to identify the types of support available to persons impacted by COPD and/or their next of kin from healthcare providers and the broader community. A second aim was to evaluate the support offered.

Methods

The systematic integrative review¹⁶ was registered with a review protocol on PROSPERO (CRD42023462784), in 2023.¹⁷ Throughout this review PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-analyses) was used as guidance.¹⁸ Supporting information is to be found in the Prisma checklist (Supplementary Material 1).

Search Strategy and Screening

A librarian confirmed the search strategy designed on the inclusion criteria. The librarian also assisted in some database searches. A pre-defined keyword search of the following electronic databases was performed from October to December 2023: PubMed, CINAHL, Psych INFO, SCOPUS, Web of Science. A second database search was undertaken in January 2024 to identify any further published papers meeting the study inclusion criteria. The search terms were Chronic obstructive pulmonary disease or COPD and Support. The persons with COPD are diagnosed in GOLD stage 1–4, A-D or A-E¹ and treated in primary and hospital care. All articles are in the English language, not to be equal to only English-speaking countries.

The studies chosen for inclusion were empirical in nature, incorporating qualitative, quantitative, and mixed-method approaches. These included interpretative, descriptive, correlational, randomized controlled trials, and non-randomized studies published in peer-reviewed journals. However, studies such as protocols, editorials, commentaries, case studies, expert reports, abstracts, conference proceedings, and dissertations were excluded from consideration.

Participants were persons diagnosed with COPD and next of kin to those affected by COPD.

Studies involving healthcare professionals were excluded from this review.

The study selection process is illustrated in Figure 1 using the PRISMA Flowchart.

Figure 1 Flowchart of the process.

Two authors, (HJ and CB), screened the titles and abstracts of the studies. Following this, a full-text relevance screening was conducted by two authors (LLJ and CB). After reviewing the titles, abstracts, and full texts, the lead author included 104 studies for quality appraisal. The quality assessment was performed by all three authors (HJ, LLJ, and CB). Any discrepancies regarding the inclusion of a study were discussed within the review team, leading to a final decision on whether to include or exclude each study. Studies excluded after (n=104) (Supplementary Material 2).

Quality Assessment

Evaluating data and assessing quality in a systematic integrative review is a complex process that requires clear guidance.¹⁹ The following quality assessment tools were used: a Critical Appraisal Checklist for Qualitative Research,²⁰ a Checklist for Quasi-Experimental Studies,²¹ and a Critical Appraisal Checklist for Randomized Controlled Trials (The Joanna Briggs Institute).²² These tools were applied to the relevant components of mixed-method studies. After completing the quality appraisal, a total of 68 studies were included in this review.

Data Extraction and Analysis

Data were extracted from each study, including relevant details such as study design, objectives, location, participants, demographic information of next of kin, outcome measures, findings, statistical analyses, and qualitative analyses. In studies that involved individuals with COPD and healthcare professionals, only the results relating to those with COPD, along with their next of kin and healthcare professionals, were included. For studies that examined multiple diseases, only data pertaining to individuals with COPD or their next of kin were utilized.

Data analysis employed a constant comparison method^23,24 to develop categories relevant to the review’s aims. This process involved identifying codes and categories from the qualitative and quantitative studies separately. The quantitative data were synthesized into broader categories based on the type of outcomes evaluated. An effort was made to compare and align these categories with those derived from the qualitative data, culminating in the development of main categories across all study types. This approach allowed for limited consideration of the methodological approaches in each included paper, facilitating the integration and synthesis of findings based on a shared focus on the same phenomenon.

The lead author (HJ) conducted the initial analysis. The second and third authors (LLJ and CB) reviewed the themes for accuracy and representation of the initial data before final confirmation.

Results

Included Studies

Figure 1 illustrates the findings from the literature search. A total of 68 studies were included in this systematic integrative review. Table 1 summarizes the characteristics of the included studies, all of which were published between 2014 and 2023. The studies were conducted in 20 countries worldwide: Australia,^25–27 Canada^28–30 China,^31–34 Colombia,³⁵ Denmark,^36–39 France,⁴⁰ Germany,^41,42 Iceland,⁴³ Indonesia,⁴⁴ Iran,⁴⁵ Ireland,^46,47 Italy,^48,49 Korea,⁵⁰ New Zealand^51,52 Norway,^53–56 Portugal,^57–59 Sweden,^53,60–71 The Netherlands,^72–74 United Kingdom,^75–85 and USA.^86–91 Out of these 68 studies, 47 studies performed only qualitative approaches,^{25–31,33,36–39,41–43,45–49,53–57,59,60,62–66,68–70,73.77.78.81.83.86.88–90.92} 15 studies used only quantitative methods,^{32,34,35,40,44,50,51,71,72,74,75,80,84,87,91} and 6 studies utilized mixed methods.^{52,58,61,67,76,79}

Table 1 Characteristics of Included Studies

Support in Various Forms is Crucial for Persons with COPD

Social support is crucial in self-management and managing daily life.^31,76,77,87 Social support is a crucial factor in COPD. Persons with COPD who have social support experience depression levels within the normal range, compared to those without social support.⁴⁴ Persons with COPD receive support from different sources, but the primary source is spouses/next of kin as caregivers.⁵⁰ Family members/ next of kin or friends to persons with COPD are often described as those providing practical or emotional support.^{41,58,59,65–67,76–78} Emotional support was associated with strengthening physical functionality in basic activities,³⁵ and emotional support is crucial for patients, as it provides them with someone to talk to when they need comfort, wish to express their feelings, discuss challenges, or seek advice.⁷³ Social support is, therefore, a vital factor in managing COPD. Notably, more respondents who reported having social support exhibited depression levels within the normal range compared to those who lacked such support. Additionally, having family members nearby enhances the practical support available to these patients.^36,37 For those persons with COPD, emotional support in daily life involves maintaining old habits and patterns as much as possible and adjusting tasks as needed with support from relatives, primarily through physical efforts such as rearranging items at home.^53,54,85 Living with others and being part of a family fosters higher levels of perceived social support, including total support, emotional/informational support, and positive social interaction. These factors are significantly associated with increased step counts and physical activity,^87,91 and functionality in basic activities were related to informational and emotional support.³⁵ Women with COPD stated that their relationships with significant others, including family members, friends, and medical professionals, greatly enriched their daily lives.⁶³ They emphasized that support in managing everyday activities was essential. Ongoing assistance and encouragement from healthcare professionals and loved ones were deemed necessary for their well-being,⁹² and people with COPD with support around them better manage their illness.³² Some experienced the information and support clinicians gave them poorly, so they were to acknowledge dependence on family and all support they provided,⁸² tips, and financial support.^33,60,78 Support in peer coaching was seen as a way to learn from and connect with a peer who shares similar life experiences.⁸⁹

 A robot used for medical support could be experienced as social support since their family and friends were interested in it and enjoyed visiting to see the person with COPD and the robot. Furthermore, some individuals with COPD appreciated the presence of the robot, as they felt it had a personality and provided good company.⁵¹ Although psychological issues were talked about during nurse-led meetings, no actions were taken to address them. Most individuals with COPD reported feeling well-supported by their families.⁷⁹

In contrast, healthcare professionals were frequently perceived as offering informational support.⁷⁸ Support for persons with COPD is provided through information and knowledge about the diagnosis.⁷⁹ Social support from healthcare providers and social networks is crucial for managing COPD. Many individuals experience anxiety and changes to their daily routines due to their symptoms. Relying on healthcare professionals and peers can provide valuable therapeutic and educational support to help navigate these challenges.^39,43 They also desire information on how to act during exacerbations and which symptoms to monitor to manage their illness.^25,55 Support in a consistent healthcare contact providing information from a holistic perspective is desired.^36,38 Persons with COPD desire support from healthcare, preferably through physical meetings and access to someone they can call when needed. However, they may need more concrete advice from nurses.³¹ Healthcare professionals should offer guidance and support in various areas, including physical training, health education, psychological support, and motivational communication,^28,40,56,82 while also facilitating peer support.^27,30,52,88 Personal commitment involves healthcare professionals who genuinely care for their patients, acknowledging individuals with diseases such as COPD. This means listening to patients and allowing them to share their stories without facing judgment. It’s not merely about conducting medical tests or checks; it’s about fostering engagement and providing meaningful assistance.^29,47,61 To provide the best possible support, healthcare professionals should inquire about psychological issues.⁷⁹ Holistic support throughout the disease process is essential to good primary care treatment. There is a need for reformed services that better reflect patients’ needs through improved communication between professionals and patients, facilitating better access to services.⁸⁰

Support is Requested by Next of Kin to Persons with COPD

Caregivers for individuals with COPD are often their next of kin.^50,84 More than half of those diagnosed with COPD are married or in a partnership, 75% live with others, and 90% report having a family caregiver.⁸⁷ These caregivers often find themselves in a challenging situation and may lack adequate support. Most information and interventions tend to focus on the individuals affected by the disease, rather than directly addressing the needs of their caregivers.^53,81 Consequently, family members of people with COPD require support that includes knowledge about the disease, its symptoms, and effective management strategies.^{42,49,54,58,75} Next of kin feels overwhelmed by all the symptoms and the responsibility of assessing the affected individual’s needs while also handling practical and financial tasks and assisting with medication. Next of kin feel unseen and unsupported by the healthcare system.^{27,37,39,45,62,63,68} The next of kin wishes to be kept informed about the status of the person with COPD, as they want to be involved in the healthcare and planning process.⁶⁶ However, support ratings from family members and financial assistance tend to be lower, indicating a potential lack of support and the economic impact of being the next of kin to someone with severe COPD.⁶⁷ These concerns can lead to caregiver burden. Research shows that caregiver burden is linked to the condition of the person with COPD; specifically, caregiver burden scores tend to decrease when the patient’s self-efficacy score increases. The patient’s self-efficacy is higher when their social support score is elevated, which often comes from support provided by the next of kin.⁵⁰ Although the emotional states of caregivers did not change significantly due to the intervention, there were considerable improvements in their caregiving burden, CADI global score, and the subscales related to reactions to caregiving, physical demands of caring, and vague family support.⁷⁵ The burden of caregiving negatively impacts social support; specifically, a higher caregiving burden significantly affects caregivers’ overall quality of life.³⁴

Next of kin need support, which is best provided by recognizing and addressing their burden.⁷⁹ A prerequisite for providing support is that caregivers acknowledge the needs of relatives, especially female relatives.⁷³ It is evident that caregivers often receive less support than they require when they seek help from health professionals.⁴⁸ While healthcare professionals sometimes provide the support caregivers request through designated contact persons, this assistance only sometimes meets their needs. Additionally, some caregivers have connected with family caregiver associations, which have offered them valuable information, facilitated access to one another, and allowed them to share their experiences as family caregivers.⁶⁴

The support needed by caregivers differs from the support provided by healthcare staff. Informal caregivers seek emotional, practical, and informational support, while healthcare professionals primarily focus on providing information. As a result, caregivers often feel neglected.^69,70 Home care support can alleviate the burden on relatives by reducing the need for travel. However, caregivers want more assistance regarding the symptoms and management of respiratory difficulties affecting their loved ones.⁷⁴ While professional home care is primarily aimed at the patient, it often does not address the needs of informal caregivers.⁵³ Caregivers also express a desire for improved communication between hospitals and home care services, as well as better planning for discharge procedures. They feel it is crucial to be included in the healthcare process and recognized for their contributions beyond their caregiving roles.⁴⁸

Many individuals desired informal support from friends, particularly those in similar situations who could offer valuable peer support.⁴⁸ They believed that support and information available through the Internet could foster a sense of community, and support groups were generally viewed positively.⁴⁶

Families and friends played an important role in supporting many caregivers by expressing understanding and listening to their frustrations and concerns. Caregivers also felt a sense of security when they could share responsibilities for the person with COPD) with others, including home care workers, healthcare professionals, or neighbors.⁶²

Support Accessible and Valued by Persons with COPD and Their Next of Kin

Healthcare professionals should provide advice, information, and guidance to help patients reframe their expectations, acknowledge their current situation, and enhance their autonomy.⁷⁷ When the nurse provides concrete advice, persons with COPD only sometimes perceive that they have received concrete advice due to communication deficiencies.³¹ Family members/next of kin expressed satisfaction with the support provided, both in hospitals and at home.⁷⁴ However, they needed more concrete advice.³¹ Relatives desire more information about symptoms and treatment to feel secure and safe.^55,75 Information was preferred through interaction rather than instruction ²⁸ and in the right amount and level.⁸³

The involvement of individuals with COPD and their families is crucial in discussions to provide optimal support and develop effective interventions.⁸⁴ Next of kin who are present and support in assessing symptoms and acting experience being caught in a dilemma between the affected persons, themselves, and healthcare, and therefore need additional support in these situations.⁵³ The family members participating in training programs with the affected individual gain a deeper understanding of the disease and its symptoms, enhancing their ability to provide support.⁵⁷

 A multidisciplinary team and collaboration between all levels of care and society are crucial for optimal support.⁷⁹ Therefore, the problems faced by those affected should be considered in healthcare planning and resource allocation to provide the best possible support.⁸⁰ Carers often face challenges when coordinating with healthcare services. They frequently find the healthcare system to be unpredictable and inaccessible. Many carers feel that healthcare professionals are impersonal and, at times, demeaning. They believe their concerns are often dismissed, and unresolved issues are overlooked.⁶² Additionally, health professionals only sometimes recognize carers as experts or valuable resources. In contrast, carers strongly desire to be informed and involved in decisions regarding caring for individuals with COPD. Typically, people with COPD spend a significant amount of time updating their healthcare providers about their condition, which leaves them with little opportunity to discuss what they consider essential in their daily lives.³⁸

Home-based care and rehabilitation are alternatives to outpatient visits and hospitalization that support persons with COPD in participating in and benefiting from their training and care.⁴⁰ Receiving professional assistance at home not only provided help and relief but also necessitated adjusting to the presence of new individuals in their space multiple times a day. This situation disrupted the couple’s privacy and the natural rhythm of their daily lives.⁵³

Support programs can be beneficial as they provide insight into how others manage their illness, offer social contacts, and promote relationships with next of kin.⁸⁸ Participating in a training program provides support through interaction with others in similar situations^52,55,85 and encourages adherence while avoiding disrupting the group dynamic. Training interventions should be flexible and accessible, as transportation can be a barrier.⁸⁵ Supervision during training is perceived as an essential support function.⁵² They should also be family-focused and foster patient engagement to provide the best support.⁸⁵ Support from fellow patients in rehabilitation increases adherence and continuity.²⁹ When rehabilitation involves relatives, participation increases more than fivefold.³¹

Support programs help manage the disease by providing knowledge about its progression, symptoms, severity, and rehabilitation.^28,33 Various e-health tools can be supportive.⁸² Having a clear healthcare plan is essential.⁷⁹ E-health tools empower affected individuals to control and manage their disease.⁸²

Internet-based knowledge sources increase understanding of the disease, its management, treatment, and prognosis.³³ Support and training via digital platforms increase flexibility, participation opportunities, and cost-effectiveness, leading to increased engagement.⁵² Coaching via IT or telephone resulted in a lack of personal contact, demonstrating that the physical distance between staff and patients hindered relationship-building. Participants expressed a desire for face-to-face meetings with professionals.⁶¹

Relatives are essential in supporting training by providing information, advice, practical assistance with various tasks, and emotional support. Additionally, face-to-face contact with healthcare professionals proved beneficial, as it helped in becoming familiar with the system.⁷⁸ Information and knowledge via the internet were problematic because computer literacy was lacking.⁶⁴

Additionally, a robot can support persons by remembering medication and reminding them of training.⁵¹ Persons with good healthcare contact see no need for additional support via digital platforms.⁶¹

Confidence in Synthesized Results

Since most of the studies included in the review were qualitative and mixed methods studies, it seemed relevant to assess the level of confidence in each category using the Grading of Recommendations Assessment, Development, and Evaluation–Confidence in Evidence from Reviews of Qualitative Research (GRADE-CERQual).⁹³ CERQual has previously been applied to more descriptive-level review findings in syntheses.

GRADE-CERQual comprises four domains that assess uncertainties in the data: methodological limitations, relevance, adequacy of data, and coherence, and aims to evaluate and describe through a transparent procedure how much confidence/reliability there is in the findings. Therefore, an overall confidence rating of “high”, “moderate”, “low”, or “very low” was assigned to each category, considering each of the four GRADE CERQual components. All categories were judged to have a moderate to high confidence level (Table 2). This judgement was because they were based on rich material where the context was relevant, the data had coherence, and there were only minor methodological limitations. All studies with methodological flaws were not included in the review.

Table 2 Summary of the Results and Its Reliability

Discussion

This systematic integrative literature review identifies key elements that could serve as a foundation for developing an intervention involving individuals with COPD and their next of kin. The findings highlight how care for individuals with COPD is currently delivered and what aspects it emphasizes. It is important to recognize that the next of kin are often taken for granted and need to be consistently acknowledged in the care process. This review addresses some of the existing knowledge gaps and can serve as a starting point for creating necessary interventions. Current interventions primarily target the person with COPD, and few interventions involve caregivers but do not directly address caregivers with support to provide care and be emotional support for the person with COPD.¹² Caring for a relative with COPD can be a stressful experience. The unpredictable nature of the disease, particularly the threat of severe and unexpected breathlessness, often leads to emotional distress for family caregivers. Many carers feel frustrated by the lack of comprehensive explanations from health professionals regarding the disease’s progression and management strategies, leaving them unprepared for their caregiving role. Additionally, family carers frequently report a lack of emotional support and respite services, which are crucial for enabling them to continue providing care throughout the course of the disease.

The relationship between the family caregiver and the person with COPD is also affected; the affected persons’ breathlessness can hinder communication, isolating the patient from their spouse and family. Spouses have reported that feelings of intimacy and friendship with their partner diminish, leading to a sense of loss of personal identity and motivation to care. Nevertheless, caregivers persist in their roles, driven by a sense of duty influenced by marital vows and societal expectations.

A review by Cruz et al⁹⁴ highlighted the negative impacts of caring for a person with COPD on their next of kin, categorizing these impacts into five themes: physical health, emotional health, social health, relational health, and financial/employment impacts. Physical health is compromised, as caregiving is demanding and leads to fatigue. Constant supervision and assistance contribute to social isolation since the person with COPD becomes increasingly dependent. These findings align with our own observations regarding health, emotional, and social aspects of caregiving. Furthermore, Zakrisson et al⁹⁵ discovered that caregivers experienced relief from their burdens when included in a pulmonary rehabilitation session. During these sessions, they learned strategies to enhance their own well-being and received support from others facing similar challenges. Supportive interventions can improve caregivers’ coping skills, boost their self-efficacy in managing patients’ symptoms, and reduce emotional distress.⁹⁶ Since most interventions have specific outcomes tailored to particular domains, it is essential to customize these interventions to address the unique needs and challenges of family carers.⁹⁷

Despite the significant burden placed on informal caregivers, formal support for them is largely inadequate.¹² Few studies have involved the patient-caregiver dyad in educational and self-management sessions during pulmonary rehabilitation, leading to conflicting results.^12,98,99 These interventions primarily focused on enhancing caregivers’ understanding of the disease and providing coping strategies to support patients with COPD. However, it’s important to recognize that informal caregivers are individuals who also require personalized interventions to improve their physical and psychological well-being.

In the Nordic countries, the healthcare system and care structure generally expect next of kin to participate in the care of the affected individual.¹⁰⁰ In general, the efforts made by next of kin in ordinary housing are two to three times greater than those provided by formal care.¹⁰¹ According to the Swedish National Board of Health and Welfare (2014),¹⁰² one in four people in Sweden over the age of 55 provides care for a family member or loved one. This responsibility can lead to a decreased quality of life due to high stress levels, which can affect one’s health, as evidenced by this study. A study from Ireland shows that next of kin lack or receive inadequate support as caregivers, which confirms our study’s findings regarding family members’ involvement in the role of informal caregivers. There are strategies to support next of kin, but there is difficulty in implementing this support in practice.¹⁰³

A recent study researched and evaluated a nurse-led supportive care service for patients with chronic obstructive pulmonary disease (COPD). The key areas of focus included symptom management, advance care planning, home visits, expert advice, continuity of care, trust-building, compassion, and support for caregivers. These areas align with our findings.

The study also provided suggestions for improvements. Patients with COPD value receiving care in their homes, and both patients and their caregivers appreciate the opportunity to participate in nurse-led advance care planning. It is essential to consider the experiences of patients and caregivers when developing healthcare services that effectively address the needs of those living with COPD.¹⁰⁴ But still, the focus is on managing and coping with COPD; the support is still sparse regarding the need for caregivers.

Several studies in our review focused on COPD treatment, physical activity, and how COPD affects the person with COPD. The support supplied to the person with COPD needs to be developed with more focus on emotional support. Emotional support has been proven to affect the frequency of depression in persons with COPD and increase the ability for physical activity, which in turn enhances well-being. Several studies in our review highlight the need for support through permanent care contact with the healthcare system to reduce readmission. One model that may be suitable is the Transitional Care Model (TCM).¹⁰⁵ This TCM model has been developed, has documented positive effects on the sufferer’s health, and has also been shown to reduce hospital readmission.^106,107 The transitional care model is designed to provide comprehensive care for chronically ill patients, both in the hospital and continuing at home. For individuals with chronic diseases or complex treatment plans, this model emphasizes a care approach that prioritizes continuity of care, with the goals of prevention and avoiding complications related to their conditions. Additionally, the model involves patients and their families in the care process, coordinating closely with physicians. This active engagement is essential for improving and promoting the health of individuals with chronic illnesses.¹⁰⁸ According to this review,¹⁰⁸ the benefits of TCM include reduced re-hospitalization time, increased lifespan, enhanced physical performance and quality of life, greater patient satisfaction, decreased repeated hospital visits, and lower healthcare costs. Nevertheless, once again, the caregiver is involved as a team member, but their well-being is disregarded.

The challenge is thus finding alternative working methods to benefit the persons with COPD and their relatives. This double perspective aligns with “Primary Care Reform”,^109–111 based on finding effective collaboration methods, such as through multi-professional teams, reinforced discharge procedures, and care coordinators. A person with COPD, along with their next of kin, can benefit from education during care transitions. While this practice is less common in Sweden, it is implemented in many other countries. Research suggests that the most effective interventions are comprehensive and include multiple components. This approach ensures that the discharge process involves both the affected individuals and their next of kin, providing them with education for self-care and making the overall care more person-centered and efficient.¹⁰⁶

This review identified significant gaps in knowledge on support for those with COPD and their next of kin/caregivers. Support, within the broader definition, includes help and understanding from a physical, psychological, and social perspective. It should be addressed on equal terms to persons with COPD and their carers. The limitations of existing literature on support for COPD patients underscore the necessity for additional research.

Strengths and Limitations

This systematic review has several strengths. To our knowledge, it is the first comprehensive review that synthesizes empirical evidence on the support provided to people with COPD and their families. Additionally, the review includes studies with various methodological approaches, which enriches the data summary and synthesis and strengthens the overall findings. However, some limitations should be acknowledged. The authors published three studies in the review, but all assessments of all included articles were treated according to the different tools to avoid bias. Three different tools from The Joanna Briggs Institute^19–21 were used to assess quality. These are sweeping (broad) judgment tools for disparate methodology and data, which may affect the quality assessment.

Therefore, the quality was only set to Low, Medium and High. Those with Low assessment were excluded. Another limitation of the review is that it only included studies published in English and did not consider grey literature, which may have resulted in the exclusion of relevant studies. The findings originate from a variety of countries, and although they reflect a diverse population, they may not be fully transferable or generalizable to all the represented countries, or to those not directly included in the study.

Implications for Research and Practice and Directions for Future Research

This review highlights the significant impact that COPD has on the daily lives of individuals diagnosed with the condition, as well as on their family members. It emphasizes the need to develop a comprehensive lung program that supports patients and their caregivers to enhance their understanding of the disease and improve self-management. This means acknowledging everyone involved and using their knowledge, abilities, and experience to strengthen self-care activities. Further research is needed to examine the available support types and how they affect individuals with COPD and their families. Exploring and measuring the nature of the assistance provided and how it is received is essential.

Conclusions

In conclusion, this systematic integrative literature review identified key elements regarding support that could serve as a foundation for developing an intervention involving individuals with COPD and their next of kin, addressing their needs. Further research is necessary to explore the impact of support, assistance, and understanding from physical, psychological, and social perspectives within the daily lives of both those with COPD and their caregivers.