Mi SciELO
Servicios Personalizados
Revista
Articulo
Indicadores
-
Citado por SciELO
-
Accesos
Links relacionados
-
Citado por Google
-
Similares en SciELO
-
Similares en Google
Compartir
Enfermería Global
versión On-line ISSN 1695-6141
Enferm. glob. vol.18 no.53 Murcia ene. 2019 Epub 14-Oct-2019
https://dx.doi.org/10.6018/eglobal.18.1.342621
Articles
Hope promoting interventions in parents of children with special health needs: a scoping review
1Msc in Children Health and Pediatric Nursing, Universidade Católica Portuguesa. Lisbon. Portugal.
2Institute of Health Sciences, Universidade Católica Portuguesa.
The concept of hope has been identified as central to nursing and have gained visibility in the caring of children with special health needs and their families. With the emergence of new challenges in pediatric nursing and knowing the needs and adversities parents are facing in their daily life, interventions that promote hope should be highlighted.
Objective:
to map the interventions that have been implemented and evaluated to promote hope in parents of children with special health needs.
Method:
a scoping review was held, following Joanna Briggs Institute methodology, in the databases Pubmed, CINHAL complete and SciELO, in portuguese, english and spanish and in the time window from 2008 to 2018.
Results:
Seven studies were included in this review. The research that was found is mostly qualitative, dispersed in time and differentiated in terms of conceptual framework. Mostly evaluated in individuals, the studies encompass either group and individual interventions, with a large variability of contexts and intervention characteristics.
Conclusion:
discussions about hope promoting interventions in pediatric nursing care are currently occurring, the need for more research persists for the validation of hope promotion interventions in parents of children with special health needs.
Key-Words: Hope; Pediatric Nursing; Special Health Needs
INTRODUCTION
Hope, although widely explored in health literature, has just appears in nursing literature in the late eighties of the twentieth century, defining the concept for specific populations and listing the first hope inspiring strategies1. Currently defined as a dynamic, multidimensional, central to life, highly personalized and forward-looking concept, hope confers empowerment, is related to external help, to care and to the concept of faith2)and have, as well, implications for action3. The International Council of Nurses, in the International Classification for Nursing Practice (ICNP), defines hope as the feeling of having possibilities, confidence in others and in the future, enthusiasm for life, as well as expressing reasons and willingness to live, inner peace and optimism associated with goal setting and energy mobilization4.
The concept was also defined in two spheres and six dimensions3. The spheres are characterized as generalized hope, a hope with a broad, unspecified focus; and particularized hope, that is oriented toward objects of hope and concrete goals. On the other hand, dimensions of hope refer to a set of components that structure the experience of hope, being framed in terms of the affective dimension (emotions and feelings related to hope); cognitive dimension (the way each individuals wish, imagine, perceive, think, learn, generalize, interpret and judge their experiences of hope); behavioural dimension (corresponding to the actions that are performed in order to achieve the expected objectives); affiliative dimension (focusing on sense of involvement with the self, others and God, and can be reflected in the objects of hope); temporal dimension (that is reflected in the notion of the past experience, the presence of hope in the present and its orientation towards the future); and contextual dimension (corresponding to the person’ life experiences and its influence as a part of the experience of hope)3. Each dimension can belong to any of the spheres of hope3.
Several other definitions of the concept have been constructed, such as by Owen (1989), which describes a conceptual model for understanding the meaning of hope in people with cancer. Along with the described, the concept of hope has been identified as central to nursing and linked to other concepts, such as hopelessness and despair5. The conceptual frameworks described by Travelbee (1971) and Morse, Penrod (1999), which contain hope as the central element5, are an example of the centrality of the concept to nursing. Likewise, Jean Watson, in her Philosophy and Science of Care, describes 10 factors of caring, among which is the Installation of Faith-Hope6.
Associated to the concept of Hope, the International Council of Nurses at ICNP identifies the diagnosis of Hope and Hopelessness7. On the other hand, NANDA-I identifies as diagnosis: readiness for enhanced hope, as a pattern of expectations and desires for mobilizing energy on one´s own behalf, which can be strengthened; and hopelessness, as a subjective state in which an individual seen limited or no alternatives or personal choices seemed to be available and is unable to mobilize energy on own behalf8).
Since it has been seen that the measurement of levels of hope can improve nursing care9, the need to evaluate hope has encouraged the construction and validation of measurement instruments, such as Herth Hope Index10, validated for the Portuguese population, and the Snyder Hope Scale11.
In the scope of the intervention, the International Council of Nurses, at ICNP, defines intervention lines to promoting hope such as Counselling about Hopes and Promoting Hope12. Likewise, NIC defines as hope-promoting interventions those that result in an improved belief in one's ability to initiate and maintain actions13. As activities that promote hope, are defined: helping the person / family to identify reasons for hope in life; inform the person about being temporary or not, the current situation; to demonstrate hope by recognizing the person's intrinsic value and seeing his illness as just an aspect of himself; expand the repertoire of coping mechanisms of the person; to teach the person to recognize reality, and to make contingency plans; to assist the person to establish and to revise goals related to his object of hope; to help one to expand one's spirituality; avoid masking the truth; facilitate the incorporation by the person of a personal loss of his or her body image; facilitate the person / family to remember and appreciate past achievements and experiences; emphasize lasting relationships by mentioning the names of loved ones; promote memory or oriented memory of life, as appropriate; actively involve the person in their own care; develop a plan of care that involves the achievement of goals, starting from the simplest to the most complex; encourage therapeutic relationships with important people; to teach the family the positive aspects of hope; offer opportunities for the person / family to get involved in support groups; create an environment that facilitates religious practice, as appropriate13.
The concept of hope has gained increasing visibility in the caring for children with special health needs and their families. A child with special health needs is defined as the one who have or is at risk of having a chronic physical, emotional, behavioural or developmental condition14)(15; as well as the one that requires health care beyond what is generally required by children in general14.
It is clear that Pediatric Nursing faces major challenges arising from contemporary changes likewise the increase average life expectancy, morbidity, chronic illness and the number of children with disabilities or risk of developmental delay16. The pertinence of promoting hope interventions emerges from the daily realization of parents needs in the face of adversity17. Under the performance of a specialized pediatric nurse may arise specific strategies for promoting hope in pediatric population, like the evaluation of interaction patterns and resources of hope in the established relationship between the young child and the nurse or the implementation of hope promoting strategies16.
Research on the implementation and evaluation of promoting hope interventions in pediatric nursing care is growing, in spite of being a relatively recent phenomenon in the nursing literature1, nevertheless some systematization is still lacking. For this matter, the present Scoping Review was carried out, with the aim of mapping the interventions that were implemented and evaluated to promote hope in parents of children with special health needs. The primary review question was: "What interventions have been implemented and evaluated to promote hope in parents of children with special health needs?"; and the secondary review questions were the following:1.What are the conceptual frameworks of promoting hope interventions in parents of children with special health needs?;2.What is the type of intervention (individual, group)?;3.What are the characteristics (dose, duration and frequency) of interventions implemented and evaluated to promote hope in parents of children with special health needs?;4.In which contexts (acute / chronic hospital care, day hospitals, mutual help groups), are hopeful interventions implemented and evaluated?5.In which populations (individuals, groups), are hope interventions implemented and evaluated?.
METHOD
This review was based on the methodology proposed by Joanna Briggs Institute for the conduct of Scoping Reviews18, and had as inclusion criteria the following:
Population: were considered all studies focusing on the parents and / or family of the child and young people up to the age of 2116, with special health needs. It is understood as parents and / or families the set of individuals who have the responsibility to provide care to the child/ young person16; it is understood as child / young people with special health needs: the one who has or is at risk of having a chronic physical, emotional, behavioral or developmental condition14)(15; as well as the one that requires health care beyond what is generally required by children in general, regardless of diagnosis14.
Concept: were considered all studies referring to interventions that promote hope. It was defined as hope promoting interventions the ones that result in an improvement on one's belief in own ability to initiate and maintain actions13.
Context: were considered studies carried out in the various care contexts of pediatric nursing care, namely hospitals, health centres, schools, community care, home care and home care network(16.
Type of studies: were considered qualitative and quantitative studies, published in Portuguese, English and Spanish, in the time window from 2008 to 2018.
The search strategy used was based on 3 steps and aimed to obtain published and unpublished studies. An initial search was carried out, limited to PubMed and CINHAL databases, followed by the analysis of the keywords and index terms that were used to describe them. Were then selected the boolean operators and descriptors to be used. Subsequently, another search was done using the selected Boolean descriptors and operators, in all included databases. Finally, a third search was carried out, through bibliographical references of the included articles, in order to reach the maximum possible results.
The following equation describes the interaction between the indexed terms / MeSh descriptors used, the Boolean operators and the priority of each descriptor in order to perform the search:“(hope) AND (Pediatric nursing OR Pediatric care OR maternal-child nursing OR neonatal nursing) AND (parents OR mother)”. The research was carried out in the following databases: Pubmed; CINAHL complete (byEBSCO); SciELO -Scientific Electronic Library Online. Unpublished studies were conducted using Google Scholar. The search was carried out on 4 May 2018 and repeated on 18 May 2018. The results were evaluated and selected as to their relevance for inclusion based on the information provided in the title and abstract. Subsequently, selected articles were the subject of an integral reading that precedes their integration in the selected final sample. The flowchart presented (image 1) describes the selection process to which the articles were submitted.
RESULTS
The results of the seven included articles in this review are summarized below. The synthesis of data for the presentation was performed according to an instrument adapted from the one proposed in the methodological manual for Scoping Reviews of Joanna Briggs Institute18. Of the seven presented articles, two concern the same intervention19)(20. It was decided to include both, since they pertain to different methodological approaches that bring different contributions to the eligibility of the intervention.
Chart 1presents the results regarding the publication year, research design and aims of the study. Some of the included studies belong to the same authors, suggesting their research course in this field. The research is dispersed in temporal terms, and the studies presented are essentially of a qualitative nature.
Chart 2presents the included studies regarding to their population, intervention context, conceptual framework and type of intervention. In terms of populations (individuals, groups), the interventions were mostly evaluated in individuals (father, mother)19)(21)(23)(24)(25or in the mother-father dyad20, and there was a study who resorted to group22. With regard to the context of the intervention, outpatient clinic19)(20)(23, hospital care21)(22)(23)(25and mutual help groups23)(24were identified, showing the variability of intervention contexts.
Chart 2- Results regarding to their population, intervention context, conceptual framework and type of intervention
![](/img/revistas/eg/v18n53//1695-6141-eg-18-53-646-gt8.png)
Chart 3,4and5present the results regarding the characteristics and main results of the intervention.
Regarding the intervention characteristics, these were quite distinguished, wish was plausible by the variability of the application contexts. All of the interventions presented had positive results in the promotion of hope, as well as for other results, such as increased parental trust in health professionals19, decreased parents' uncertainty20, and increased feelings of control21.
DISCUSSION
The number of studies included in this review constitute a small sample, however, it is consistent with the proposed framework, showing the cross-cutting results of various practice contexts. This sample justifies the need presented and encourages future research in the context of hope promoting strategies in parents of children with special health needs.
It was verified that the interventions presented fall under the Promoting Hope, as a line of intervention described by the International Council of Nurses12; as well as agree with the hope promoting activities presented by NIC, namely with regard to expanding the repertoire of coping mechanisms for the person; to assist the person to establish and to revise goals related to his object of hope; avoid masking the truth; actively involve the person in the care; develop a plan of care that involves the achievement of goals, starting from the simplest to the most complex; encourage therapeutic relationships; and provide opportunities for the person / family to engage in support groups13.
It was also verified that, despite the existing knowledge that the measurement of levels of hope leads to improvements in nursing care9, only in one of the presented studies was used a hope assessment scale (Herth Hope Index)20.
Thereby, it was corroborated that the research regarding implementation and evaluation of hope promoting interventions in pediatric nursing care is growing, being a relatively recent phenomenon in the nursing literature1.
Several limitations were experienced during the study, mainly because most of the results obtained in the search were related to the experiences of parents of children with special health needs and not to the implementation and evaluation of interventions. Some of the interventions presented are limited in their application in other contexts of practice, according to the limitations of the studies mentioned by the authors20)(25, while another one will require specific training for their application22.
As recommendations for future research, it is suggested to extend the search strategy to other databases and others resources of unpublished literature in order to obtain a greater range of results and to make a more sensitive evaluation of the existing literature.
CONCLUSIONS
Hope promoting interventions are currently discussed in various contexts of pediatric nursing care, comprising a large variety of populations and characteristics. Although it is not the central concept in some of the studies obtained, it was recognized that has added value to the obtained results. There is a highlighted need for more research to validate interventions that promote hope in pediatric nursing care.
Therefore, it´s concluded that nursing team's play a crucial role in promoting hope in parents of children with special health needs
It was possible to fulfill all the review questions, so an appropriate methodological approach is concluded. However, due to the limitations already described and according to the recommendations presented, it is necessary to broaden both the investigation and the search carried out.
REFERENCIAS
1. Cutcliffe JR, Herth K. The concept of hope in nursing 1: it´s origins, background and nature. British journal of nursing. 2002; vol 2 (12): 1-8. Disponível em: https://www.ncbi.nlm.nih.gov/pubmed/12131834 [ Links ]
2. Cutcliffe JR, Grant G. What are the principles and processes of inspiring hope in cognitively impaired older adults within a continuing care environment?. Journal Psychiatri and Mental Health Nursing. 2001 Oct; (5):427-36. Disponível em: https://www.ncbi.nlm.nih.gov/pubmed/11882163 [ Links ]
3. Dufault K, Martocchio BC. Hope: its Spheres and Dimensions. Nursing Clinics of North American. Junho 1985; vol. 20 (2):379-391. Disponível em: https://www.researchgate.net/publication/19314918_Hope_Its_Spheres_and_Dimensions [ Links ]
4. Nurses IC. ICNP browser. Internacional Council of Nurses: ICN; 2018. Disponível em: http://www.icn.ch/what-we-do/ICNP-Browser/icnp-browser.html [ Links ]
5. Tutton E, Seers K, Langstaff D. Exploration of hope as a concept for nursing. Journal of Orthopaedic Nursing. 2009 (13): 19-127. Disponível em: https://www.sciencedirect.com/science/article/pii/S1361311109001290 [ Links ]
6. Tomey AM, Alligod, MR. Teóricas de enfermagem e a sua obra (modelos e teorias de enfermagem). 5ª ed. Loures: Lusociência, 2004. P. 63-176 [ Links ]
7. Nurses, IC. Internacional Classification for Nursing Practice: nursing diagnosis and outcome statements. Geneva: ICN; 2017. Disponível em: http://www.icn.ch/images/stories/documents/pillars/Practice/icnp/icnp2017-dc.pdf [ Links ]
8. Herdman TH, Kanitsuro S. Nursing diagosis: definitions and classification 2015-2017. Oxford: Wiley Blackwell; 2014. Disponível em: http://www.iaud.ac.ir/dorsapax/userfiles/file/Daneshkadeh/Parastari_mamaei/Nursing%20Diagnoses%202015-2017%20-%20Definitions%20and%20Classification,%2010th%20Edition%20(Nanda%20Internation.pdf [ Links ]
9. Balsanellil AC, Grossi SA, Herth K. Avaliação da esperança em pacientes com doença crônica e em familiares ou cuidadores. Acta Paul Enferm. 2011; 24(3): 354-358. Disponível em: http://www.scielo.br/pdf/ape/v24n3/08.pdf [ Links ]
10. Balsanellil AC, Grossi SA, Herth K. Cultural adaptation and validation of the herth hope index for Portuguese language: Study in patients with chronic illness. Texto Contexto Enferm. 2010; 19(4): 754-761. DOI: 10.1590/S0104-07072010000400019. Disponível em: http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0104-07072010000400019 [ Links ]
11. Snyder CR, Sympson SC, Ybasco FC, Borders TF, Babyak MA, Higgins RL. Development and validation of the State Hope Scale. Journal of Personality and Social Psychology. 1996; 70(2): p. 321-335. Disponível em: http://dx.doi.org/10.1037/0022-3514.70.2.321 [ Links ]
12. Nurses, IC. Internacional Classification for Nursing Practice: nursing interventions statements. Geneva: ICN; 2017. Disponível em: (http://www.icn.ch/images/stories/documents/pillars/Practice/icnp/icnp2017-ic.pdf) [ Links ]
13. Bulechek GM, Butcher HK, Dochterman JM. Classificação das Intervenções de Enfermagem (NIC). Tradução da 5ª edição. Rio de Janeiro: Elsevier; 2010. 370 p. [ Links ]
14. Hughes DA. Review of the literature: pertaining to family-centered care for children with special health needs. Palo Alto: Lucile Park Foundation for Children´s Health. Oct 2014. Disponível em: https://www.lpfch.org/sites/default/files/field/publications/review_of_the_literature_pertaining_to_family-centered_care_for_cshcn.pdf [ Links ]
15. Alves JM, Amendoeira JJ, Charepe ZB. A parceria de cuidados pelo olhar dos pais de crianças com necessidades especiais de saúde. Rev Gaúcha Enferm. 2017; 38(4):e2016-0070. Doi: http://dx.doi.org/10.1590/1983-1447.2017.04.2016-0070. Disponível em: https://www.researchgate.net/publication/321492208_A_parceria_de_cuidados_pelo_olhar_dos_pais_de_criancas_com_necessidades_especiais_de_saude [ Links ]
16. Regulamento n.º 351/2015, de 22 de Junho. Regulamento dos Padrões de Qualidade dos Cuidados Especializados em Enfermagem de Saúde da Criança e do Jovem. DR II série - 119 [ Links ]
17. OE. Guias orientadores da boa prática em enfermagem de saúde infantil e pediátrica- volume III [internet]. Ordem dos Enfermeiros; 2011. Disponível em: https://www.ordemenfermeiros.pt/arquivo/publicacoes/Documents/CadernosOE_GuiasOrientadoresBoaPraticaCEESIP_Vol_III.pdf [ Links ]
18. Institute JB. Joanna Briggs Institute Reviewers´ Manual: 2015 edition. Joanna Briggs Institute; 2015. Disponível: http://joannabriggs.org/assets/docs/sumari/Reviewers-Manual_Methodology-for-JBI-Scoping-Reviews_2015_v2.pdf [ Links ]
19. Hendricks-Ferguson VL, Haase JE. Parent Perspectives of Receiving Early Information About Palliative and End-of-Life Care Options From Their Child's Pediatric Providers. Cancer Nursing. 2018; 00(0): 1-9. Disponível em: https://www.ncbi.nlm.nih.gov/pubmed/29620556 [ Links ]
20. Hendricks-Ferguson VL, Pradhan K, Shih C, Gauvain KM, Kane JR, Liu J, Haase JE. Pilot Evaluation of a Palliative and End of Life Communication Intervention for Parents of Children With a Brain Tumor. Journal of Pediatric Oncology Nursing. 2016; 1(11). DOI: 10.1177/1043454216676836. Disponível em: http://journals.sagepub.com/doi/abs/10.1177/1043454216676836 [ Links ]
21. Beasant L, Fleming P, Ingram J, Johnson D, Manns S, Pontin D, Redshaw M. "Giving us hope": Parent and neonatal staff views and expectations of a planned family-centred Discharge process (Train-to-Home). Health Expectations. 2017; 20:751-759. DOI: 10.1111/hex.12514. Disponível em: https://www.ncbi.nlm.nih.gov/pubmed/28001322 [ Links ]
22. Almeida LM, Barbosa MA, Munari DB, Oliveira C, Santos LF, Peixoto MK. Therapeutic factors in group support from the perspective of the coordinators and group members. Acta Paul Enferm. 2012; 25(1): 122-127. Disponível em:http://www.scielo.br/scielo.php?script=sci_arttext&pid=S0103-21002012000100021 [ Links ]
23. Charepe ZB, Figueiredo MH, Vieira MM, Neto LM. (Re) Descoberta da esperança na família da criança com doença crónica através do genograma e ecomapa. Texto Contexto Enfermagem. 2011; 20(2): 349-58. Disponível em: http://www.scielo.br/scielo.php?pid=S0104-07072011000200018&script=sci_abstract [ Links ]
24. Charepe ZB, Figueiredo MH, Vieira MM, Neto LM. Grupos de ajuda mútua como estratégia de promoção da esperança nas mães de crianças com doença crónica. I Seminário Internacional "Contributos Da Psicologia Em Contextos Educativos". 2010. [ Links ]
25. Maxton FJ. Parental presence during resuscitation in the PICU: the parents'experience. Journal of Clinical Nursing. 2008; 17: 3168-3176. Doi: 10.1111/j.1365-2702.2008.02525.x. Disponível em: https://www.ncbi.nlm.nih.gov/pubmed/19012784 [ Links ]
Received: September 19, 2018; Accepted: October 21, 2018