Alleviating suffering of individuals with multimorbidity and complex needs: A descriptive qualitative study

Design

A qualitative descriptive design was used because it allows for studying a given phenomenon in a naturalistic context.^18,19 In qualitative descriptive studies, a greater emphasis is placed on understanding the subjective views of participants in their natural settings ²⁰ and generating “largely unadorned answers” for informing research and practice, ¹⁸ (p. 337).

Setting and sample

All the nurses working in two hospitals in Islamabad, Pakistan, were invited to participate through the hospital management and flyers. These hospitals have both inpatient and outpatient settings, and many complex patients visit these hospitals daily. An estimated number of complex patients visiting these hospitals was 25-30 per week. The purposive sample consisted of nurses working in inpatient care settings. The inclusion criteria were: nurses above 18 years of age, nurses with a degree or diploma in nursing, nurses with at least 6 months of working experience, and nurses who stated that they had cared for patients with multimorbidity and complex health needs.

Data collection

The data collection was completed from October 2020 until January 2021, using a semi-structured interview guide. The guide included questions about demographic information. The interview questions explored nurses’ definitions of individuals with multimorbidity and complex needs (i.e., complex patients) and the nature of their suffering, their challenges, their experiences of caring for individuals with multimorbidity and complex needs and alleviating their suffering, and strategies used to effectively address suffering in these patients. The interview guide was evaluated and revised after interviews with three nurses. After this evaluation, additional questions were added asking nurses to share clinical experiences of caring for individuals with multimorbidity and complex needs, their needs and care approaches, and the effect of social and cultural factors on the care of individuals with multimorbidity and complex needs, their suffering, and nurses approaches to alleviate this suffering.

Two researchers conducted online interviews in both English and Urdu using Zoom (https://zoom.us/). One researcher had a masters’ degree and the second researcher has a doctorate and both have experience in conducting qualitative interviews. During interviews, the participants were respected and listened to attentively. Probing questions (tell me more about this, could you please elaborate, please clarify) were used to explore their perspectives. The researchers noted personal interpretations and observations about the participants’ responses and non-verbal cues of the participants and the settings. In total, 19 interviews lasted for 22 to 61 min, with an average duration of 37 min. After 17 interviews, no new responses emerged as the sample was homogeneous in terms of clinical settings. Two additional interviews were conducted to assess data saturation.

Data analysis

The data were analyzed using reflective thematic analysis.^21,22 The interviews were transcribed by two bilingual researchers, and the transcripts were entered into MAXQDA Plus 2020. The verbatim transcripts were read several times to develop a broad understanding of the participants' responses. The initial codes were developed using an inductive approach that allows for data-driven, and in vivo coding^21,22 and are consistent with the qualitative descriptive approach. ²⁰ The codes were collated based on their similarities and then refined. The refined codes were collated into preliminary sub-themes, and the sub-themes were refined and collated into final themes based on their significance, content, and meanings. Finally, the final themes were named to capture the abstract meaning of the underlying themes.^21,22 During data analysis and interpretation, both the researchers were attentive of personal biases of working as nurses with this patient population and therefore maintained a reflexive stance. Each of the researcher refrained from making presumptive claims about the data.^21,22 The researcher worked together to refine codes and generate themes by focusing on making sense of varied representations, intersecting and disconnected meanings, and resolving the disconnected meanings of nurses experiences of caring for this population. Thematic maps were used to develop a visual understanding of these representations and intersecting and disconnected meanings. The provisional themes were continuously refined before finalizing to ensure that they adequately capture the essence of nurses experiences.

Rigor and trustworthiness

We used the methodological bricolage metaphor to establish rigor. ²³ It involves using analytical moves to understanding the phenomenon through a flexible use of relevant data collection, analysis, and interpretation methods. This approach enhances the trustworthiness of qualitative research by cobbling multiple methodological decisions and choosing a combination of analytical moves. We used the following analytical moves. The data analysis was conducted collaboratively by two researchers. Reflexivity was used during data analysis and interpretation by keeping reflective journals. During data analysis, the themes were developed by staying close to the data and the processes and decisions noted. The use of software allowed for keeping an audit trail. The transcripts and developed themes were returned to 11 participants for verification and comments (member checking). Thick description of study findings was provided by using relational and interpretive account. ²⁴ These strategies contribute to establishing credibility, transferability, confirmability, and dependability. ²⁵

Ethical considerations

The ethical approval (Approval Number: F, 2/IUIC-ANMC/EC-233/2020) was obtained from the Ethical Review Committee of Al-Nafees Medical College, Islamabad, Pakistan. We reminded the participants of their right to withdraw from the study until the end of data collection, and assured them of the confidentiality of information and non-disclosure of identity. We encrypted the data and the computers, and only the researchers had access to the data.

Deeper exploration of patients’ health-illness situation and complexity

Nurses discussed that alleviating the suffering of individuals with multimorbidity and complex needs requires them to fully explore the complexity of patients’ health care problems and illness situations to discern the severity of suffering and level of required care. Nurses noted that individuals with multimorbidity and complex needs have unpredictable health conditions, limited ability to perform activities of daily living, disturbed social, familial, and personal lives, and negative influence of sociocultural and structural determinants on their illness management and suffering. Therefore, the source of the suffering of these patients can be intricate and contingent on the number and nature of health complications, resources for home and social care, psychological ability to accept their illness as a part of their lives, and momentum to self-manage their issues. One of the nurses alluded to the complexity of the health-illness situation and the need to address the ongoing and emerging needs of these individuals.

“You work in a ward, and your patient is hemodynamically stable or does not have any physiological problems, but it is possible that he might be facing psychological problems, social problems, and economical problems due to readmission and disturbance in the family process. In my view, caring for patients with multimorbidity and complexity like these, the first thing you do is assess and/or observe their level of complexity in a physical, social, and psychological sense and the negative impact of the complexity on the patient’s well-being” (Nurse, Male, Age 29).

Nurses discussed the deeper exploration of patients’ health illness situation also entails discerning when, why, and how an individual with complex needs could reach an extreme level of complexity. Nurses noted that many personal, social, and family-related factors could lead individuals with multimorbidity and complex needs to reach an extreme level of complexity. The described factors were financial issues, stress and frustration, disease burden, limited home and community care, greater emphasis on cultural and traditional approaches to care, and care neglect. They expressed the need to be aware of these issues and planning care approaches to target these aspects. One of the nurses highlighted the importance of deeper inquiry of patients’ issues and a potential way to alleviate their suffering.

“Nurses need to go beyond superficial conversation with the patients. They should explore the health history and personal and social issues which could be leading to deteriorating health and more suffering of these patients. Nurses should be knowledgeable about the complex needs and issues of patients. If they can know more about these patients, their issues of care at homes and communities, and their needs in the hospitals, they can provide care that is effective for alleviating suffering” (Nurse, Female, Age 28).

Prioritizing patients’ psychosocial and emotional needs

Nurses noted that alleviation of suffering requires being attentive and sensitive to the psychosocial and emotional needs and issues of individuals. They expressed that while most of these individuals are readmitted to the hospitals with physical and mental health issues, the more prominent contributing factors to their suffering are their psychosocial and emotional needs and issues. They elaborated that these individuals have three types of needs: (a) physical or hospital-based needs, (b) home and community-based and felt needs conceptualized as psychosocial needs, and (c) emotional needs aggravated by disease and distress or mental health issues. Therefore, addressing their suffering requires nurses to care for physical needs, but also prioritize intricate psychosocial and emotional needs. They discussed the need to discern these needs through inquiries, observations, and assessment of unpredictable patient health issues. The inquiries should explore patients’ cultural and personal values, emotional needs, concerns and fears, socioeconomic issues, and family and care provider-related issues. One of the nurses elaborated on the importance of attending to multiple aspects of care for alleviating suffering.

“We need to focus on the psychological, physical, emotional, and social care of the patients. All of these aspects should be attended to while developing a care plan for individuals with multimorbidity and complex needs. So, at each time you need to care for multiple aspects. If you are providing physical care, at the same time you need to offer psychological and emotional care. It is also important to assess the social circle of the patient and identify the kind of social, psychological, and emotional support in the home and community settings. We would have to inquire about the support of family, friends, and social groups and ask about the patient’s satisfaction with the quality of life. So, nurses should identify these needs and provide as much psychological support as they can to improve general well-being” (Nurse, Male, Age 31).

Nurses expressed the need to know about their patients’ lives, needs, and capacities to care for themselves at home and in the community as well as family issues and social issues that can aggravate their psychosocial and emotional suffering. They discussed that when attention is paid to the broader social needs, nurses need to take the initiatives to address social needs. One of the nurses described the interplay of social factors contributing to patient suffering and how nurses can help address patient suffering through comforting acts, but also advocacy, and referral to appropriate agencies.

“Many individuals with multimorbidity and complex needs are frustrated with their life and living conditions as they do not have the basic necessities of life. We cannot fully help them with such kinds of issues and can only refer to them for financial support to Bait-ul-Mall and Zakat center. But we can try to improve their experiences of care when they visit health care settings. For emotional care, we often see that those who are poor receive differential treatment in our culture. Rich people do not want to talk to these poor people at all. So as nurses if we are able to share some good moments with these patients, listen to their issues, and support them in simple ways; it could be really comforting to them. This can greatly help in addressing their suffering resulting from social factors” (Nurse, Female, Age 29).

Creating a comforting environment to foster sharing of felt needs

Nurses recognized the need to create comforting environments to foster patient sharing of their issues and felt needs and enhance the development of therapeutic relationships. They noted that nurses’ kindness and empathic communication with patients are two crucial elements of a comforting environment. Nurses noted that practicing kindness is of utmost importance for learning more about patient needs, developing effective relationships, addressing their suffering, and improving their recovery. Nurses discussed kindness is manifest in empathetic communication conceptualized as nurses’ ability to genuinely talk with and listen to patients and interpret their hidden issues. Empathetic communication is conveying personal expectations to patients and responding to their requests. One of the nurses shared how nurses’ need to practice compassion could improve nurse–patient relationships and care.

“Individuals with multimorbidity and complex needs expect health care professionals to understand their values and respect them. We as nurses should be truly attentive to the needs of these patients. We should learn about kind behaviors that are useful for dealing with individuals with multimorbidity and complex needs. Our behaviours and communication should be kind so that these patients can develop a trustworthy relationships. Politeness is at the heart of kindness and effective communication. When this happens, these complex patients feel comfortable interacting with the health care professional and willingly allow them to get involved in difficult decisions” (Nurse, Female, Age 37).

Nurses elaborated that creating comforting environments to foster sharing means becoming a part of patients’ social lives and avoiding actions and behaviors that could be threatening to them and are not aligned with their cultural values and beliefs. It is more than just comforting them and entails genuine encounters demonstrating interest in their lives. Nurses noted that during any encounter, patients should get an impression that the nurse is truly invested in exploring their issues and assisting them in overcoming suffering. One of the nurses discussed how practicing kind communication and demonstrating genuine interest in patients can help create a comforting environment, thereby alleviating their suffering.

“If I am communicating with kindness to the patient, I have become a part of his social life. Now, when I engage fully with them, they would openly discuss a lot of things about their life. Like a person who is frustrated; until we communicate with kindness, that person would not be willing to share their issues, and would keep the problems to themselves. Patients explore their social connections and think about how and to whom they can trust and share their problems. So, if nurses try to become part of patients’ social life through genuine interest and if the nurses demonstrate kind behaviours, the patients will be comfortable in sharing their issues with them. When patients can share their sensitive issues with nurses, this is a way of alleviating their emotional stress and suffering” (Nurse, Male, Age 30)

Instilling hope and encouragement in patients

Nurses greatly emphasized the need to instill hope and encourage patients to manage their multiple chronic health issues with guidance from nurses. Nurses shared the observations that often when these patients are readmitted, they are frustrated and exhausted with the health care process and bureaucratic system that offer limited support. Therefore, they noted that one of the essential nursing tasks is to identify available external support resources for the patients and facilitate them in effectively using those resources. The necessity to instill hope and encouragement was considered valuable to help patients manage emotional turmoil and develop resilience to alleviate their own suffering originating from sociocultural, familial, and health care system-related challenges and deteriorating multiple chronic illnesses. Nurses emphasized the need to address the emotional issues of patients because these issues can affect nurses ability to care for these patients. One of the nurses offered an account of patients’ frustration and nurses’ role in assisting patients.

“These patients are often frustrated with the health care process and system, and you can see that frustration in their behaviours. Many patients are exhausted and frustrated due to longer stays in the hospital than expected and the negative behaviours of health care professionals. Due to this frustration, sometimes, these patients even refuse any sort of medical or nursing care. In these situations, the first step is to support them and offer reassuring words to motivate them to take care of themselves. We should not only inspire them but work with them and be there for them so that they know that we have not left them in limbo” (Nurse, Female, Age 38).

Nurses considered patient encouragement and enhanced hope integral to addressing their suffering. They expressed that working with them and helping them understand their psychosocial, emotional, and physical issues comprehensively without imposing personal interpretations. When patients are supported to address their own issues, they are better able to identify their needs, resources, and competencies, and seek guidance from nurses as the need emerges. Nurses noted that hope and encouragement for patients that they can control their issues contribute towards boosting their confidence and morale in managing complex multiple chronic illnesses. This, in turn, serves as a mediator in enabling them to address their own suffering. One of the nurses illustrated how she was able to instill hope and encouragement.

“I cared for a patient with dialysis who also had heart-related issues. His main need was to achieve emotional contentment and alleviate emotional distress. He was frustrated and distressed due to his complex health issues and had talked about giving up his life. To provide effective care, I knew I had to better understand his felt needs. I knew that I had to learn more about his emotional needs and views on his health issues. Some of his emotional needs were connected to unmet physical needs. I used to sit with him during each shift for 15 to 20 minutes, listening to him and offering my knowledge of his illness. I used to tell him ‘you’ve got this’ and ‘let’s keep going’. He stayed with us for 7 days, and I saw marked improvement in his ability and motivation to care for himself. I think I tried my best to manage his physical issues as well as emotional distress so that he could achieve greater contentment. Nurses also need to develop tolerance and patience to meet the felt needs of patients adequately” (Nurse, Male, Age 28).

Implications for research

Several areas for future research can be generated from this study. First, this study offered some insights about how determinants of health can influence the health experiences of individuals with multimorbidity and complex needs and care delivery. However, future studies should develop a greater understanding of the impact of social determinants of health on patients’ experience within the health system from the patients’ and their families’ perspective. Second, Future research could also explore nurses views about identifying and addressing psychosocial needs, designing care plans, and test nurse-led interventions to alleviate patient suffering. Third, Further research can focus on using mixed methods approaches to develop data collection instruments determining the levels of quality of care, barriers and facilitators to alleviating patient suffering, and more interventions targeting patient suffering through comparative analysis of patients with multimorbidity and complex needs and those with single disease. Finally, future research is warranted to develop a comprehensive understanding of the nature of comforting environments that promotes sharing of suffering from patients as well as nurses perspective.