Cystic Fibrosis Healthcare Report: Family-Centered Care Approach

This report presents a comprehensive analysis of a Cystic Fibrosis case study, focusing on the healthcare needs of a patient named Todd and his family. The report begins with an Ecomap to visualize family and community connections, followed by questions to assess the family's social and cultural context. A key focus is on cultural competence, addressing potential issues related to race, ethnicity, and cultural beliefs, and proposing resolutions to ensure sensitive and effective care. The report then explores themes for discussion with the parents, Sarah and Anthony, including nutrition, airway clearance techniques, and family history, emphasizing the importance of family support. Confidentiality and data sharing are also discussed, addressing ethical considerations and legal frameworks. Finally, the report outlines themes to explore with Todd, including medication adherence and nutritional needs. The report integrates research and ethical guidelines to provide a holistic approach to cystic fibrosis care, considering the patient's physical, social, and cultural well-being.

Running Head: CYSTIC FIBROSIS 1
Healthcare in Social Work
Student’s Name
Institutional Affiliation

CYSTIC FIBROSIS 2
Table of Contents
Table of Contents.......................................................................................................................................2
Ecomap.......................................................................................................................................................3
Segment 1...................................................................................................................................................4
Questions for the Ecomap.........................................................................................................................4
Potential Competence Cultural Issues.....................................................................................................4
Resolutions for Cultural Competence Issues.......................................................................................6
Meeting Sarah and Anthony; Themes of Discussion..............................................................................7
Nutrition.................................................................................................................................................7
Airway Clearance Techniques (ACT)......................................................................................................7
Other Themes....................................................................................................................................8
Family History with respect to Cystic Fibrosis; Question......................................................................8
Confidentiality.......................................................................................................................................8
Sharing and Documentation of Data; 6b.................................................................................................9
Sharing...................................................................................................................................................9
Documentation.....................................................................................................................................10
Segment 2.................................................................................................................................................10
Themes to explore with Todd.............................................................................................................10
Activities to Introduce.............................................................................................................................11
References................................................................................................................................................13

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Ecomap
Key
4 lines- strong relationship
3 lines- weak relationship

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Segment 1
Questions for the Ecomap
(i) How easily does Todd connect with people? How does Todd behave when around
people? Is he friendly?
(ii) How does the family feel about the neighbors around their home? Who spends most of
the time with Todd when the parents are at work?
(iii) Are all needs of the family met? Is the family dependent on support from agencies? Are
there supportive friends?
(iv) What is Todd’s attitude towards School? Is there a time when Todd misses school? Does
he like schooling?
(v) Does Todd’s family has strong connections with their culture?
(vi) Does Todd engage in any activities outside school?
(vii) What is the quality of the relationship in the interactions between Todd and his parents?
(viii) Is there any member of the family that relates with Todd?
(ix) Does Todd receive good medical care?
(x) How well do parents like Todd? How much time does Todd spend with the parents? How
often do the parents speak with Todd?
("A Simple Guide to Eco-Maps - Strong Bonds - Building Family Connections", 2018);
(RIC, 2006)
Potential Competence Cultural Issues
Cultural awareness and social diversity is among the ethical standards that have been
published in the NASW Code of Ethics ("Code of Ethics: English", 2018). The clause on culture
awareness provides or social workers understanding culture and its role in individual behavior

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and society as a way of upholding the value of all cultures in their ethical decision making
(Spitzer, Silverman, & Allen, 2015). By having a background knowledge on Todd’s family
culture, I as the medical social worker will be able to demonstrate that am competent when
handling services that are sensitive to culture considering the personal differences between
people (“Culture and personal beliefs”. 2018). Race, ethnicity, national origin, color, sex, sexual
orientation, gender identity or expression, age, marital status, political belief, religion,
immigration status, and mental or physical ability are all important considerations. Electronic
social work service is also not exceptional as per these requirements ("Code of Ethics: English",
2018).
Working with young people with a diverse cultural background should not be guided by
cultural stereotypes. The first duty of the social worker should be evaluating the family values
and traditions and for this case values of the Wates Family. Research finds out that young people
often struggle with the strong cultural expectations from the society (Centre for Multicultural
Youth, 2018).
The potential cultural issues for this case include, time and experiences in a community,
legal status and oppression experiences, immigration history and narrative, health and healing
practices and beliefs, religious practices and spirituality, holidays, food, customs, rituals, trauma
experiences and crisis events, family education, work values, gender roles, family structure and
roles, pain, daily customs, life stages, language and communication patterns (Spitzer, Silverman,
& Allen, 2015). All these practices are culturally determined have been established to be
transmitted from generation to generation. Anthony, being an African American could have
experienced discrimination and racism in the past or could have been affected indirectly. For that
reason, he might have his own worldview that has difficulties in trusting healthcare social

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workers. Native Americans have a culture of value to listening than talking. They believe in the
flexibility of time and therefore, spending time with their children is more important than
medical appointments at times. Health and healing beliefs and practices are of particular
importance and could lead to serious challenges if not considered. For example, if Todd could
have been subjected to the use of certain native plants for medicine, using modern medicine,
could lead to serious drug reactions. The same case happens with certain foods.
Moreover, a patient like Todd, could be culturally conditioned to speaking less about
himself and matters of an intimate body function to a high profile person, like an MSM (Spitzer,
Silverman, & Allen, 2015).
Resolutions for Cultural Competence Issues
I would resolve these competence issues by training on sensitivity care, identifying the
particular healthcare challenges, helping patients declare to their rights to competent care,
learning about traditional healing practices and customary supplements, foods and herbs and
incorporating them in comprehensive psychological-spiritual assessments (American Council on
Science and Health,2000; Spitzer, Silverman, & Allen, 2015). As an MSM, I should seek
information from other healthcare providers affiliated to these cultures of people. Because Native
Americans believe it is disrespectful to look somebody directly in the eye (Spitzer, Silverman, &
Allen, 2015), I should discover if that can affect Sarah and avoid it when necessary. I should
also, as much as I appreciate cultural competence, weigh situations that would need violating
some beliefs to ensure better health care. But I should communicate and advise the family before
taking such an action.

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Meeting Sarah and Anthony; Themes of Discussion
Family support and intervention is among the main identified reasons for an improved
life expectancy (survival) for up to 50 years (Barr, Britton, Smyth & Fogarty, 2011; Buzzetti et
al., 2012). I would extensively discuss themes of nutrition and physiotherapy.
Nutrition
With nutrition being a very important issue for any Cystic fibrosis patient I would bring
up the matter for discussion with both Anthony and Sarah (Smyth 2014, UW Health, 2016). I
would seek to understand whether the parents provide enzyme pills, foods with high calories and
extra salt, a lot of vitamins. These foods have been identified to compensate for problems of
digesting foods for the patients. I should also enquire whether the family medication is affiliated
on any dietitian (Yen, Quinton, & Borowitz, 2013). Moreover, I should seek to know whether the
parents make regular observations of the weight and height of Todd.
Airway Clearance Techniques (ACT)
I should seek knowledge on the airways clearance methods done by the parents on Todd
and how they do it. The most applicable technique in a home setting is manual chest
physiotherapy because it is more traditional. I would seek to understand the skills of how Todd’s
parents perform the postural drainage by asking either Anthony or Sarah to explain to me. I
should then take note of how they explain about body positioning as part of the physiotherapy. I
should ask them whether they use a pillow, bean bag chair or couch cushions to support the
process. On percussion and vibrations which are also methods of manual physiotherapy, I should
find out whether their explanation is in line with recommended practices like proper positioning,

CYSTIC FIBROSIS 8
time taken, strong coughing, and the time the routines are done; before meals and bedtime (UW
Health, 2016).
Other Themes
Other considerations include family planning, how parents allow Todd to interact with
neighbors and friends, religious faith, communication patterns with Todd, medical intervention,
the seriousness of the disease, and financial implications – the burden of disease (Miller, &
Dimatteo, 2013; Reynolds, 2014).
Family History with respect to Cystic Fibrosis; Question
Since cystic fibrosis is an inherited disorder, both of you must have the cystic fibrosis
gene; dominant or recessive, for Todd to inherit the disorder. Do both of you have a complete
family history with a detailed lineage, starting with your parents to grandparents? Do both of you
know both of your parents and grandparents and their spouses? Were they suffering from cystic
fibrosis? Do you have records of their health history in your archives?
Confidentiality
In order to respond to specific unanswered questions (gaps in research) researchers must
collect sensitive data about individuals (Wolf, Patel, Williams, Austin, & Dame, 2013).
However, it is important that researchers keep the data confidential and make promises to do so
which are then documented in a consent form (National Institute of Health, 2015). The American
Medical Association's (AMA) Code of Ethics states that confidentiality between a doctor and a
patient is important. Without people’s consent to allow sharing of information, a researcher
cannot publish it (Wolf et al., 2013). But not all state and federal laws are in line with this notion
("AMA Code of Medical Ethics | American Medical Association", 2018). In healthcare service,
confidentiality can never be absolute since the social worker will still have to discuss the

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information with other practitioners or their managers before publishing ("Confidentiality",
2018)
Response to Sarah; 6a
I should make Sarah understand that there is missing data relating to family history and
transmission of cystic fibrosis genes and that this research will help solve that gap.
I should then refer to her that there is a legal framework for protection of personal
information; The Human Rights Act 1998, which integrates the right to a private and family life;
The common law duty of confidentiality; The Data Protection Act 1998, covering protection of
personal information. I would also tell her that we are going to use her data, even though
maintaining her privacy, by not mentioning her involvement or any of her family’s involvement
in research ("1.6 Information Sharing and Confidentiality", 2018). And since the private data is
not related to any crime, there is total preservation of Sarah’s privacy. I should also explain that
there are measures set to minimize the risk of disclosure of information. This is by issuing
Certificates of Confidentiality. I should also confirm to her that certificates are strongly
protective of data.
Sharing and Documentation of Data; 6b
Sharing
For legitimate purposes related to the medical care of the patient, or for other essential
functions of the healthcare system such as teaching, research, confidentiality may be breached
(Janssens, et al., 2015). For example, you can consult another medical team for advice about a
patient without explicitly getting permission from the patient. You can also use cases as
examples for medical students, for research and so forth. For the latter, it may be necessary to de-
identify the patient where appropriate.

CYSTIC FIBROSIS 10
For that reason I should share Sarah’s information with informed consent that is purely
relevant to the missing information, not in explicit details or like an interesting story. I should
share it in a manner that I respect Sarah’s plea not to disclose about her grandmother’s rape.
Since Sarah’s fact of the situations are indeed significant for the research I should disclose them
though taking into consideration her safety and her family’s safety. I would only share the
necessary, information and to the appropriate people and in a secure manner following
Hoffington Medical Associates policy on security and personal information.
Documentation
This information should be documented following advice from seniors, legal personnel or
the Hoffington Medical Associates’ data protection lead (Janssens, et al., 2015). I would only
document the necessary, information in an appropriate and a secure manner following
Hoffington Medical Associates policy on security and personal information and the federal laws
(1.6 Information Sharing and Confidentiality, 2018; Duytschaever et al., 2016).
Segment 2
Themes to explore with Todd
I should find out how Todd follows the medical prescription by engaging him in a health
talk (Mogayze, 2013). I should also find out how often he takes medication and whether he does
so with ease (comfortably). I should ask him whether he thinks medication and treatment relieves
him.
I should also explore the nutrition theme because patients of cystic fibrosis require strict
nutrition care. The feeding pattern of Todd for the present day determine his health in the future
days. I should therefor seek to know whether he has been having enough of calories. I should

CYSTIC FIBROSIS 11
also find out what is the extent his lung infection affects his appetite. I should also discuss
whether he is gaining or losing weight (Smyth, 2014).
School life is important now that Todd is in High school. How he interacts with people is
also important. Finding out whether he is suffering from discrimination in some activities is also
vital. That means I should discuss all these with Todd. I should also discuss whether he is dating
since most of the youths of his stage (adolescence) are definitely dating or in love (Ivarsson,
Ekmehag, & Sjöberg, 2013). I should also ask Todd’s performance in class and whether
absentism because of disease has affected his academic life. Matters to do with teachers’ support
are also important to discuss. I should also look explore Todd’s goals and career aspirations. I
should ask him what he want to become later in future and examine the hope in his dreams.
Activities to Introduce
Since research shows that daily physical activity improves the pulmonary gas exchange
and that self-treatment pooled together with physical activity are effective in improving the
condition, I should advise Todd to explore simple activities of such nature (Maslach, & Jackson,
2013). However I should advise him to avoid activities of vigorous strength like wrestling
because it may lead to injuries and he does not have much strength like his healthy schoolmates.
I should emphasis on the importance of following the prescriptions seriously and appreciating
them as it they are the only thing that keeps him alive. Nutrition and the feeling of anorexia are
not to be ignored because they determine the general weight considering he burns a lot of
calories because of disease (Chinuck, Dewar, Baldwin, & Hendron, 2014; Haller, 2014). I should
also encourage Todd to socialize with fellow students at school and even have a close friend,
even a girl when necessary as that may help the situation and bring happiness to himself, only if

CYSTIC FIBROSIS 12
he prefers it though (Miller, & Dimatteo, 2013).. I should also encourage him to pursue his
dreams and work towards becoming what he wants in future (Smyth, 2014).

CYSTIC FIBROSIS 13
References
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and age at death from cystic fibrosis in England and Wales (1959 to 2008): cross sectional
study. BMJ, 343(aug23 1), d4662-d4662. Doi: 10.1136/bmj.d4662
Buzzetti, R., Alicandro, G., Minicucci, L., Notarnicola, S., Furnari, M., & Giordano, G. et al. (2012).
Validation of a predictive survival model in Italian patients with cystic fibrosis. Journal Of
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cystic fibrosis.
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Dysbiosis of bifidobacteria and Clostridium cluster xiva in the cystic fibrosis fecal
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Haller, W., Ledder, O., Lewindon, P. J., Couper, R., Gaskin, K. J., & Oliver, M. (2014). Cystic fibrosis:
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7.htm

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