Understanding self-management related experience of patients with nasopharyngeal cancer: a review
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Tutik Sri" "apellidos" => "Hariyati" ] 2 => array:2 [ "nombre" => "Efy" "apellidos" => "Afifah" ] 3 => array:2 [ "nombre" => "Tuti" "apellidos" => "Afriani" ] ] ] ] ] "idiomaDefecto" => "en" "EPUB" => "https://multimedia.elsevier.es/PublicationsMultimediaV1/item/epub/S1130862120305751?idApp=UINPBA00004N" "url" => "/11308621/00000031000000S2/v2_202104141019/S1130862120305751/v2_202104141019/en/main.assets" ] "itemAnterior" => array:18 [ "pii" => "S1130862120305738" "issn" => "11308621" "doi" => "10.1016/j.enfcli.2020.12.011" "estado" => "S300" "fechaPublicacion" => "2021-04-01" "aid" => "1745" "copyright" => "Elsevier España, S.L.U." "documento" => "article" "crossmark" => 1 "subdocumento" => "fla" "cita" => "Enferm Clin. 2021;31 Supl 2:S147-S151" "abierto" => array:3 [ "ES" => false "ES2" => false "LATM" => false ] "gratuito" => false "lecturas" => array:1 [ "total" => 0 ] "en" => array:10 [ "idiomaDefecto" => true "titulo" => "Stress and coping mechanism among women workers in the tobacco sector – A mixed method study" "tienePdf" => "en" "tieneTextoCompleto" => "en" "tieneResumen" => "en" "paginas" => array:1 [ 0 => array:2 [ "paginaInicial" => "S147" "paginaFinal" => "S151" ] ] "contieneResumen" => array:1 [ "en" => true ] "contieneTextoCompleto" => array:1 [ "en" => true ] "contienePdf" => array:1 [ "en" => true ] "autores" => array:1 [ 0 => array:2 [ "autoresLista" => "Berlian Nurtyashesti Kusumadewi, Monica Kartini" "autores" => array:2 [ 0 => array:2 [ "nombre" => "Berlian Nurtyashesti" "apellidos" => "Kusumadewi" ] 1 => array:2 [ "nombre" => "Monica" "apellidos" => "Kartini" ] ] ] ] ] "idiomaDefecto" => "en" "EPUB" => "https://multimedia.elsevier.es/PublicationsMultimediaV1/item/epub/S1130862120305738?idApp=UINPBA00004N" "url" => "/11308621/00000031000000S2/v2_202104141019/S1130862120305738/v2_202104141019/en/main.assets" ] "en" => array:19 [ "idiomaDefecto" => true "titulo" => "Understanding self-management related experience of patients with nasopharyngeal cancer: a review" "tieneTextoCompleto" => true "paginas" => array:1 [ 0 => array:2 [ "paginaInicial" => "S152" "paginaFinal" => "S156" ] ] "autores" => array:1 [ 0 => array:4 [ "autoresLista" => "Che Azunie Che Abdullah, Sanisah Saidi, Siew Pien Lee" "autores" => array:3 [ 0 => array:3 [ "nombre" => "Che Azunie" "apellidos" => "Che Abdullah" "referencia" => array:1 [ 0 => array:2 [ "etiqueta" => "<span class="elsevierStyleSup">a</span>" "identificador" => "aff0005" ] ] ] 1 => array:4 [ "nombre" => "Sanisah" "apellidos" => "Saidi" "email" => array:1 [ 0 => "sanisahsaidi@iium.edu.my" ] "referencia" => array:2 [ 0 => array:2 [ "etiqueta" => "<span class="elsevierStyleSup">a</span>" "identificador" => "aff0005" ] 1 => array:2 [ "etiqueta" => "<span class="elsevierStyleSup">*</span>" "identificador" => "cor0005" ] ] ] 2 => array:3 [ "nombre" => "Siew Pien" "apellidos" => "Lee" "referencia" => array:1 [ 0 => array:2 [ "etiqueta" => "<span class="elsevierStyleSup">b</span>" "identificador" => "aff0010" ] ] ] ] "afiliaciones" => array:2 [ 0 => array:3 [ "entidad" => "Medical-Surgical Nursing Department, Kulliyyah of Nursing, International Islamic University Malaysia, Kuantan Campus, Kuantan, Pahang, Malaysia" "etiqueta" => "a" "identificador" => "aff0005" ] 1 => array:3 [ "entidad" => "Special Care Nursing Department, Kulliyyah of Nursing, International Islamic University Malaysia, Kuantan Campus, Kuantan, Pahang, Malaysia" "etiqueta" => "b" "identificador" => "aff0010" ] ] "correspondencia" => array:1 [ 0 => array:3 [ "identificador" => "cor0005" "etiqueta" => "⁎" "correspondencia" => "Corresponding author." ] ] ] ] "resumenGrafico" => array:2 [ "original" => 0 "multimedia" => array:7 [ "identificador" => "fig0005" "etiqueta" => "Figure 1" "tipo" => "MULTIMEDIAFIGURA" "mostrarFloat" => true "mostrarDisplay" => false "figura" => array:1 [ 0 => array:4 [ "imagen" => "gr1.jpeg" "Alto" => 2754 "Ancho" => 2083 "Tamanyo" => 340025 ] ] "descripcion" => array:1 [ "en" => "<p id="spar0010" class="elsevierStyleSimplePara elsevierViewall">Flowchart showing the process of study selection.</p>" ] ] ] "textoCompleto" => "<span class="elsevierStyleSections"><span id="sec0005" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0015">Introduction</span><p id="par0005" class="elsevierStylePara elsevierViewall">Self-management (SM) refers to an individual's ability to manage the symptoms, treatment, physical, psychosocial, and lifestyle changes inherent in living with a chronic condition. This concept is translated based on the perspective of oneself or from a different field.<a class="elsevierStyleCrossRef" href="#bib0105"><span class="elsevierStyleSup">1</span></a> Therefore, the concept of SM is not rigid, it may fit into various situations based on the perspective of the people that exist in that specific situation.</p><p id="par0010" class="elsevierStylePara elsevierViewall">Thus, this literature review aims to identify the current situation regarding the SM among patients with nasopharyngeal cancer (NPC), their experience and needs, factors, and the element of SM support within the health care delivery system for them.</p></span><span id="sec0010" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0020">Methods</span><p id="par0015" class="elsevierStylePara elsevierViewall">The literature search was carried out in-depth and systematically approach.<a class="elsevierStyleCrossRef" href="#bib0110"><span class="elsevierStyleSup">2</span></a> The search keyword “self-management”, and its interchangeable use of the word such as “self-care”, “self-empowerment”, “self-efficacy”, and “self-regulation” were used with the phrase “nasopharyngeal cancer” or “head and neck (HNC) cancer” or “cancer” or “chronic illness” together with “support” or “health care providers” or “self-management support”.</p></span><span id="sec0015" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0025">Results</span><p id="par0020" class="elsevierStylePara elsevierViewall">The flow of study selection is presented in <a class="elsevierStyleCrossRef" href="#fig0005">Fig. 1</a>.</p><elsevierMultimedia ident="fig0005"></elsevierMultimedia><span id="sec0020" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0030">Main theme 1: Self-management related experience of NPC persons</span><span id="sec0025" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0035">Perceive needs towards self-management</span><p id="par0025" class="elsevierStylePara elsevierViewall">Despite of the variety of cancer types and symptoms experienced, most of the patients did not get sufficient information from health care providers (HCP) during the follow-up. The reasons for this insufficient information received by the patients were varied.<a class="elsevierStyleCrossRefs" href="#bib0115"><span class="elsevierStyleSup">3–5</span></a> Addressing this concern will allow the patients to absorb the information given more effectively, which in turn will help in strengthening their ability to manage the side effects of their cancer treatment as well as to live with it with support from HCP.<a class="elsevierStyleCrossRefs" href="#bib0120"><span class="elsevierStyleSup">4,5</span></a></p><p id="par0030" class="elsevierStylePara elsevierViewall">When focusing specifically on patients with NPC, the trend seems to be similar. The required knowledge and information regarding cancer and its treatment were reported continuously in many of the included studies.<a class="elsevierStyleCrossRefs" href="#bib0130"><span class="elsevierStyleSup">6,7</span></a> Insufficient information left the patients with a disrupted life, waiting in anxiety, and feeling like they had been left alone with their own devices. They also reported facing worries about life and death, hectic radiotherapy sessions, the highly technical environment and procedures in the radiotherapy room, separation from family, eating problems, side effects, and fear of recurrence; had all consumed them regularly. The researchers highlighted that the discrepancy of information provided to the patients disappointed them and added to their distress. Likewise, a study in China had also reported that understanding of the patients on the cancer symptoms and side effects were varied,<a class="elsevierStyleCrossRef" href="#bib0140"><span class="elsevierStyleSup">8</span></a> so as in other study.<a class="elsevierStyleCrossRef" href="#bib0145"><span class="elsevierStyleSup">9</span></a></p><p id="par0035" class="elsevierStylePara elsevierViewall">The evidence provided by the studies on the needs of the patients informed that, knowledge and information about cancer including its symptoms, treatment, and the treatment side effects are crucial aspect that is currently not being met.</p></span><span id="sec0030" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0040">Facilitators and barriers towards self-management</span><span id="sec0035" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0045">Facilitators</span><p id="par0040" class="elsevierStylePara elsevierViewall">A study by Midtgaard found that the factor which facilitated and motivated a group of cancer survivors to adhere to long-term physical activity despite their physical weakness was ‘self-determination’ to achieve a normal healthy life.<a class="elsevierStyleCrossRef" href="#bib0150"><span class="elsevierStyleSup">10</span></a> A systematic review revealed facilitators that assisted the patients to self-manage.<a class="elsevierStyleCrossRef" href="#bib0155"><span class="elsevierStyleSup">11</span></a> Patients become keen to self-manage if they experience its value and it has meaning to them.</p><p id="par0045" class="elsevierStylePara elsevierViewall">A similar situation was also observed in the findings of the study among NPC.<a class="elsevierStyleCrossRef" href="#bib0160"><span class="elsevierStyleSup">12</span></a> By staying ‘optimistic and positive’ when facing the side effects of the treatment as well as suffering from functional compromises, the patients were more than capable of accomplishing SM. Apart from that, ‘knowledge of treatment-related information’ was crucial in developing a realistic expectation and confidence. Such measures subsequently facilitate the engagement of SM in helping the patients to become positive in dealing with the disease.</p></span><span id="sec0040" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0050">Barriers</span><p id="par0050" class="elsevierStylePara elsevierViewall">Among NPC survivors, the findings showed that when comparing means of patients with and without psychological distress, NPC survivors with ‘psychological distress’ had a significantly higher score in coping of hopelessness and anxious preoccupation with the worst QOL.<a class="elsevierStyleCrossRef" href="#bib0165"><span class="elsevierStyleSup">13</span></a> Moreover, NPC survivors with psychological distress were associated with dysfunctional coping strategies with reduced QOL in the functional scale. It means that psychological distress was a significant barrier for them to function well and resulted in their QOL is negatively affected. Since the review was a quantitative study, a comprehensive insight on this theme was obtained. However, it omitted clarity on how and why the feeling of distress persist among the NPC survivors, even after two years of recurrence-free post-treatment as the inclusion criterion for this study participants.</p></span></span><span id="sec0045" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0055">Strategies towards self-management</span><p id="par0055" class="elsevierStylePara elsevierViewall">In Henry's study, ‘return to normal life’ was used as a strategy to allow cancer patients to engage and re-engage with life.<a class="elsevierStyleCrossRef" href="#bib0160"><span class="elsevierStyleSup">12</span></a> Whereas, another two other studies had found that ‘diet/nutrition/lifestyle change’ was used to manage their symptoms (eating problem, oropharynx problem, fatigue).<a class="elsevierStyleCrossRefs" href="#bib0170"><span class="elsevierStyleSup">14,15</span></a> Besides, they found that, patients also used ‘mind/body control’ (prayers, praying the rosary, music) to relieve fatigue. This is consistent with the findings by Lundberg and Rattanasuwan<a class="elsevierStyleCrossRef" href="#bib0175"><span class="elsevierStyleSup">15</span></a>. However, the study was only focused on handling the fatigue symptom. Therefore, it was difficult to relate to the strategy of SM found in this study to NPC patients since the HNC symptoms were abundant. Besides, the causes of fatigue (for example mucositis, dysphagia, pain from impaired skin integrity, and psychological distress) should also be of concern<a class="elsevierStyleCrossRefs" href="#bib0165"><span class="elsevierStyleSup">13,16,17</span></a>.</p></span></span><span id="sec0050" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0060">Main theme 2: Support provision for self-management from HCP</span><span id="sec0055" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0065">Importance of HCP in the cancer care trajectory</span><p id="par0060" class="elsevierStylePara elsevierViewall">How far the patients, especially NPC patients, value their HCP in their lives was explored in a study in China and United States<a class="elsevierStyleCrossRefs" href="#bib0190"><span class="elsevierStyleSup">18,19</span></a>. The patients expressively pointed out that because of their belief and confidence in what the HCP had previously advice, they were able to adhere to the planned treatment. This is in line with another recent study<a class="elsevierStyleCrossRef" href="#bib0200"><span class="elsevierStyleSup">20</span></a>. They found that 98% of the participants agreed that educational video and nurse facilitation during their chemotherapy treatment increased motivation to carry out SM strategies.</p><p id="par0065" class="elsevierStylePara elsevierViewall">These studies showed how adequate are the examination, treatment, and communication with the patients; these elements built trust in the relationship between the HCP-patients and subsequently resulted in active participation from the patients (as one of the important SM elements<a class="elsevierStyleCrossRef" href="#bib0105"><span class="elsevierStyleSup">1</span></a>.</p></span><span id="sec0060" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0070">Communication</span><p id="par0070" class="elsevierStylePara elsevierViewall">Factors influencing communication was in line with many studies previously discussed<a class="elsevierStyleCrossRefs" href="#bib0115"><span class="elsevierStyleSup">3–5</span></a>; patients should be ‘individually acknowledged’ based on their unique treatments, experiences of side effects, needs, and background.</p></span></span></span><span id="sec0065" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0075">Discussion</span><p id="par0075" class="elsevierStylePara elsevierViewall">The main context of SM is patients’ active participation in managing their illness with sound knowledge and support from people in their environment. This feature allows the SM concept to be one of the promising strategies to help the chronically ill population to manage their conditions that also extends to NPC patients successfully.</p><p id="par0080" class="elsevierStylePara elsevierViewall">The literature provided clear evidence that the primary concern of patients with cancer, including the NPC, stems from the need for sufficient and appropriate information and knowledge on the side effects relevant to SM as widely suggested in many studies<a class="elsevierStyleCrossRefs" href="#bib0130"><span class="elsevierStyleSup">6–9</span></a>. This concern stem from their needs to gain control of their health throughout their cancer trajectory. Therefore, the central discourse in literature was the various types and levels of information, depending on the perceptions of the participants who suffered from different types of cancer<a class="elsevierStyleCrossRefs" href="#bib0140"><span class="elsevierStyleSup">8,12</span></a>.</p><p id="par0085" class="elsevierStylePara elsevierViewall">There was also a situation among other types of cancer, but the information they needed was different because of different cancer sites and treatments. This situation rationale the previous discussion even more. Moreover, there was insufficient evidence from the literature to help guide NPC patients to make strategic choices in SM to facilitate them during their cancer care trajectory<a class="elsevierStyleCrossRefs" href="#bib0160"><span class="elsevierStyleSup">12,14,17</span></a>. Also, repeated findings across the studies pointed out that inadequate and appropriate information on how to manage the condition during cancer trajectory undeniably reflected the patients’ scarcity of knowledge on SM.</p><p id="par0090" class="elsevierStylePara elsevierViewall">Most of the searchable studies included in this review, however, were extensive information from various cancers. This situation means that the cancer ordeal extends towards generalization since the needed information is commonly standard and often not explicitly tailored towards patients in the different spectrum of cancer types. Therefore, future research should focus on the experience of specific cancer patients. Among the HNC cancer patients, especially the NPC patients, it was perceived that the impaired normal function of the HNC, for example in swallowing, speaking, and reduced saliva (xerostamia), as well as the insufficient knowledge about managing the situation, became a major source of their psychological distress and this affected their QOL.</p><p id="par0095" class="elsevierStylePara elsevierViewall">To attain the importance and effectiveness of the facilitators established; awareness of the role of contextualizing the meaning of life should be provided, health belief, culture background, as well as local health system delivery<a class="elsevierStyleCrossRef" href="#bib0115"><span class="elsevierStyleSup">3</span></a>. This step is crucial because although the patient's active participation is the core of self - management, the meaning, and practice of self - management may vary from one context to another<a class="elsevierStyleCrossRef" href="#bib0105"><span class="elsevierStyleSup">1</span></a>. To date, existing works of literature may show that the actual SM needs of NPC patients remain unclear. However, it is highly relevant, especially when evidence from the studies does not reveal any consensus about what type of support the HCP should provide. It is also unclear how the support to fulfil the need for SM engagement among the NPC patients can be effectively delivered.</p></span><span id="sec0070" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0080">Conclusion</span><p id="par0100" class="elsevierStylePara elsevierViewall">The literature suggested that the failure to manage their conditions that is SM can potentially be hazardous to the QOL of NPC patients. More worryingly, the QOL of the NPC patients has been reported to be especially reduced compared to other HNC cancer patients, particularly involving their HNC functions<a class="elsevierStyleCrossRefs" href="#bib0180"><span class="elsevierStyleSup">16,17</span></a>. However, SM engagements among NPC patients are still vague since the concept is very complex and individualized, depending on various factors and situations. Further exploration of the specific needs of NPC patients is thus justified. In particular, the consideration of their own unique experiences and the commitment of SM, therefore, can be considered of the utmost importance in helping them to enrich their physical and psychological well-being and, subsequently, to improve the QOL.</p></span><span id="sec0075" class="elsevierStyleSection elsevierViewall"><span class="elsevierStyleSectionTitle" id="sect0085">Conflict of interest</span><p id="par0105" class="elsevierStylePara elsevierViewall">The authors declare no conflict of interest.</p></span></span>" "textoCompletoSecciones" => array:1 [ "secciones" => array:10 [ 0 => array:3 [ "identificador" => "xres1496401" "titulo" => "Abstract" "secciones" => array:1 [ 0 => array:1 [ "identificador" => "abst0005" ] ] ] 1 => array:2 [ "identificador" => "xpalclavsec1358762" "titulo" => "Keywords" ] 2 => array:2 [ "identificador" => "sec0005" "titulo" => "Introduction" ] 3 => array:2 [ "identificador" => "sec0010" "titulo" => "Methods" ] 4 => array:3 [ "identificador" => "sec0015" "titulo" => "Results" "secciones" => array:2 [ 0 => array:3 [ "identificador" => "sec0020" "titulo" => "Main theme 1: Self-management related experience of NPC persons" "secciones" => array:3 [ 0 => array:2 [ "identificador" => "sec0025" "titulo" => "Perceive needs towards self-management" ] 1 => array:3 [ "identificador" => "sec0030" "titulo" => "Facilitators and barriers towards self-management" "secciones" => array:2 [ 0 => array:2 [ "identificador" => "sec0035" "titulo" => "Facilitators" ] 1 => array:2 [ "identificador" => "sec0040" "titulo" => "Barriers" ] ] ] 2 => array:2 [ "identificador" => "sec0045" "titulo" => "Strategies towards self-management" ] ] ] 1 => array:3 [ "identificador" => "sec0050" "titulo" => "Main theme 2: Support provision for self-management from HCP" "secciones" => array:2 [ 0 => array:2 [ "identificador" => "sec0055" "titulo" => "Importance of HCP in the cancer care trajectory" ] 1 => array:2 [ "identificador" => "sec0060" "titulo" => "Communication" ] ] ] ] ] 5 => array:2 [ "identificador" => "sec0065" "titulo" => "Discussion" ] 6 => array:2 [ "identificador" => "sec0070" "titulo" => "Conclusion" ] 7 => array:2 [ "identificador" => "sec0075" "titulo" => "Conflict of interest" ] 8 => array:2 [ "identificador" => "xack524112" "titulo" => "Acknowledgement" ] 9 => array:1 [ "titulo" => "References" ] ] ] "pdfFichero" => "main.pdf" "tienePdf" => true "fechaRecibido" => "2020-09-15" "fechaAceptado" => "2020-09-21" "PalabrasClave" => array:1 [ "en" => array:1 [ 0 => array:4 [ "clase" => "keyword" "titulo" => "Keywords" "identificador" => "xpalclavsec1358762" "palabras" => array:4 [ 0 => "Self-management" 1 => "Side effects" 2 => "Head and neck" 3 => "Nasopharyngeal cancer" ] ] ] ] "tieneResumen" => true "resumen" => array:1 [ "en" => array:2 [ "titulo" => "Abstract" "resumen" => "<span id="abst0005" class="elsevierStyleSection elsevierViewall"><p id="spar0005" class="elsevierStyleSimplePara elsevierViewall">This review is conducted to understand the self-management experience among the patients throughout their cancer trajectory. Five databases were inputted systematic searches from February to April 2018. Several important themes emerged from the review, including their needs, facilitators, barriers, strategies, and provision of support towards self-management. The needs for sufficient and appropriate information was the most severe concern among nasopharyngeal cancer patients. Understanding self-management from the patients’ perspectives may draw attention to specific concerns for self-management. However, the study of nasopharyngeal cancer patients is still under-researched. Therefore, exploratory research to understand their unique self-management experiences may help to design the care and support tailored to them to provide more holistic yet individualized care.</p></span>" ] ] "NotaPie" => array:1 [ 0 => array:2 [ "etiqueta" => "☆" "nota" => "<p class="elsevierStyleNotepara" id="npar0005">Peer-review under responsibility of the scientific committee of the 4th International Conference for Global Health (ICGH) in conjunction with the 7th Asian International Conference in Humanized Health Care (AIC-HHC). Full-text and the content of it is under responsibility of authors of the article.</p>" ] ] "multimedia" => array:1 [ 0 => array:7 [ "identificador" => "fig0005" "etiqueta" => "Figure 1" "tipo" => "MULTIMEDIAFIGURA" "mostrarFloat" => true "mostrarDisplay" => false "figura" => array:1 [ 0 => array:4 [ "imagen" => "gr1.jpeg" "Alto" => 2754 "Ancho" => 2083 "Tamanyo" => 340025 ] ] "descripcion" => array:1 [ "en" => "<p id="spar0010" class="elsevierStyleSimplePara elsevierViewall">Flowchart showing the process of study selection.</p>" ] ] ] "bibliografia" => array:2 [ "titulo" => "References" "seccion" => array:1 [ 0 => array:2 [ "identificador" => "bibs0015" "bibliografiaReferencia" => array:20 [ 0 => array:3 [ "identificador" => "bib0105" "etiqueta" => "1" "referencia" => array:1 [ 0 => array:2 [ "contribucion" => array:1 [ 0 => array:2 [ "titulo" => "Self-management in chronic illness: concept and dimensional analysis" "autores" => array:1 [ 0 => array:2 [ "etal" => false "autores" => array:1 [ 0 => "K.A. 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