Life journey with a chronic illness: Exploring the lived experience of older chronic illness patients while interacting with the primary health care services in Ha'il City, Kingdom of Saudi Arabia

Abstract

According to the World Health Organization, improvement in life expectancy, which is attributed to advancements made in the health sector in the 20th century, directly impacts public health and economic systems. Technological advancement in the health sector has enabled older people to perform many activities in their daily lives. However, this demographic shift has also posed some problems, such as the rising prevalence of chronic diseases and the increased costs of healthcare for families and governments. The older population in the Kingdom of Saudi Arabia (KSA) is mainly affected by chronic diseases. It burdens the healthcare system, especially in the Primary Health Care Centres (PHCCs). PHCCs are the first point of care for these patients and attend to more than 15 million citizens every year in KSA. Although primary, secondary, tertiary, and referral healthcare services are available for the public in KSA, PHCCs still need help with patient satisfaction due to the lack of proper infrastructure and integrated services. This qualitative research employs Max van Manen's hermeneutical phenomenological framework to understand the lived experiences of older people with chronic illness as they interact with PHCCs for their regular health care relating to their illness. The research design is iterative, allowing for dynamic interaction between the researcher and data through six sequential yet iterative steps: engaging with the phenomenon, collecting data through investigating life experiences, reflecting on essential themes, describing the phenomenon through writing and rewriting, maintaining a strong relation to the phenomenon, and balancing the study context. Data was collected via semi-structured telephone interviews, adapted for COVID-19 safety protocols, with older people selected from accessible and representative PHCCs. Ten participants were chosen using specific inclusion and exclusion criteria to ensure relevance and depth. The research blends the strengths of descriptive and interpretative phenomenology, rooted in Edmund Husserl's and Martin Heidegger's philosophical traditions, which emphasise the detailed description and interpretation of human experiences and meanings, and recognise these experiences as situated within specific historical and cultural contexts. The analysis involved identifying and interpreting key themes from the participants' stories and comparing and contrasting these across different participant narratives to reveal patterns and variations. The researcher engaged in a reflective process, linking the findings to existing literature and theoretical frameworks to deepen the understanding of the participant's lived experiences. Critical reflexivity was emphasised to ensure researcher biases did not influence the study's findings. Four major themes emerged: the impact of knowing about the illness; the supportive context provided by family, friends, institutions, and faith; the adaptation to a new life with a chronic disease and multiple care roles; and perceptions of care received through primary health care centres. The research findings highlighted the interplay between emotional, cognitive, and social elements of the patients’ lived experience, emphasising the significant role of the participants' emotional responses in influencing coping mechanisms and overall quality of life. The research also explored the crucial role of family/friends in disease management, and the difficulties of financial issues. The findings also highlighted the need for a more comprehensive and patient-centred approach to healthcare in KSA, which includes considering the experiences and barriers faced by older adults with chronic diseases. These findings included identifying the treatment goals, the use of religion in the process of coping, especially among Muslim adults, and the significance of education in helping patients manage their treatment and psychological care. The following are the recommendations that can be made from the research for enhancing services in the PHCCs across SaudiArabia, focusing on early identification and management of chronic diseases. The research supports screening programs for high-risk groups, frequent follow-up, and adherence to the best practices, including the involvement of specialist physicians. A particular emphasis is placed on the patient's awareness and counselling to overcome the myths associated with chronic diseases and increase patient participation in decision-making. The study recommends forming peer support groups to support chronic disease management or strengthening community networks. The research also advocates for public health campaigns that should address all population groups, focus on chronic diseases, including diabetes mellitus, to overcome cultural and societal misconceptions. To meet mental health needs, it is essential to incorporate mental health care into chronic disease management and educate healthcare workers on mental health. Other recommendations that are likely to improve the quality of healthcare and patient satisfaction significantly, include improving the interpersonal skills of PHCC staff, embracing modern technology, and ensuring that vulnerable populations are financially supported