The impact of disease on family members

The impact of disease on family members The impact of disease on family members Read the following art icle (file attached) on the impact of disease on family members: Golics, C. J., Basra, M. K. A., Finlay, A. Y., & Salek, S. (2013). The impact of disease on family members: A critical aspect of medical care. Journal of the Royal Society of Medicine, 106 (10), 399–407. After reviewing the article, which factor do you feel has the most impact on family members? Please support your response with examples from readings. What are some of the reasons it is important to include the support persons in the plan of care? theimpact_of_disease.pdf ORDER NOW FOR CUSTOMIZED AND ORIGINAL ESSAY PAPERS Review Journal of the Royal Society of Medicine; 106(10) 399–407 DOI: 10.1177/0141076812472616 The impact of disease on family members: a critical aspect of medical care Catherine Jane Golics1,2, Mohammad Khurshid Azam Basra2, Andrew Yule Finlay2 and Sam Salek1 1 Centre for Socioeconomic Research, School of Pharmacy and Pharmaceutical Sciences, Cardiff University, King Edward VII Avenue, Cardiff, CF10 3NB, UK 2 Department of Dermatology and Wound Healing, School of Medicine, Cardiff University, Cardiff, CF14 4XW, UK Corresponding author: Catherine Jane Golics. Email: [email protected] Summary Most existing health-related quality of life research concerns the impact of disease on patients. However, in several medical specialties including dermatology, oncology, and physical and mental disability, studies have been carried out investigating the impact of disease on the lives of families of patients. The aim of this paper is to review the literature which relates to the impact of disease on family members of patients. The OVIDSP Medline was selected as the primary database, Searches were limited to sources published in English. 158 papers were identified for review. The definition of ‘‘family’’ varied across the literature, and a broad definition was accepted in this review. This review shows that a wide variety of aspects of family members’ lives can be affected, including emotional, financial, family relationships, education and work, leisure time, and social activities. Many of these themes are linked to one another, with themes including financial impact and social impact being linked to emotional impact. Some positive aspects were also identified from the literature, including family relationships growing stronger. Several instruments exist to measure the impact of illness on the family, and most are disease or specialtyspecific. The impact of disease on families of patients is often unrecognised and underestimated. Taking into account the quality of life of families as well as patients can offer the clinician a unique insight into issues such as family relationships and the effect of treatment decisions on the patient’s close social group of partner and family. Introduction Quality of life (QoL) of individuals is closely related to the QoL of those around them, includingpartners or parents1. Therefore, any chronic illness carries the potential to impact on the life of the family Compared to parents of healthy children, parents of children with chronic diseasereport lower selfdevelopment, restrictions on their well-being and emotional stability and lower levels of daily ! The Royal Society of Medicine 2013 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav functioning.2 Most studies on quality of life focus on assessing the quality of life of patients. Family quality of life has been explored in dermatology,3–9 oncology,10–21 and in the ?eld of physical and mental disability,22–28 but little is known about the impact of disease on families of patients in many other specialties. Several key review articles have been written concerning the impact of illness on the quality of life of the partner,1 the impact of cancer on the family,14,19 the carer burden in mental health illness,22 the impact of chronic childhood illness on siblings,29 and the impact of chronic disease in the elderly on the patient’s family.30 Family members of patients are sometimes also carers, but those who do not act as carers are often still impacted. The aim of this paper is to review the literature relating to the impact of disease on all family members of patients, not just carers, and identify common themes. Instruments used to assess the quality of life of family members are also reviewed. Methods The OVIDSP Medline was selected as the primary database. This included the following resources: Cardi? University Books and Journals, PsycArticles, AMED (Allied and Complementary Medicine), British Nursing Index 1985-present, Embase 1947-present, HMIC (Health Management Information Consortium), ICONDA 1976 to June 2011, Medline In Process, Medline 1947-present, and PsycINFO 1806 to July Week 1 2011. A search of the Compendium of Quality of Life Instruments was also carried out.31,32 Searches were limited to sources published in English. The main search term ‘‘family quality of life’’ was also substituted with ‘‘impact/e?ect on family’’, and ‘‘secondary impact’’, and these were combined with ‘‘disease’’ (Table 1). The term ‘‘partner’’ was also 400 Journal of the Royal Society of Medicine 106(10) Results Table 1. Results of key search terms. Key search term(s) used Family quality of life Impact on family Impact of disease on family Effect on family Effect of disease on family Number of references retrieved 193 2493 13 1349 3 Family þ disease 388 Family scale 491 Family measurement 113 Impact on family þ surgery 0 Impact on family þ medicine 12 Impact on family þ dermatology 0 Impact on family þ psychiatry 0 Impact on family þ respiratory 0 Impact on family þ cardiology 0 Impact on family þ renal 0 Impact on family þ gynaecology 0 Impact on family þ paediatrics 0 Impact on family þ urology 0 Impact on family þ gastroenterology 0 Impact on family þ disability 0 Search results In total, 1517 abstracts were screened, and 158 were identi?ed for review of the full paper. Of these, 63 articles highlighted at least one aspect which was not covered in other articles. Articles were rejected if, after fully reading them, their content was already covered by other articles. No sources were identi?ed when combining the search term ‘‘impact on family’’ with several major medical specialties and only 13 sources were identi?ed using the term ‘‘impact of disease on family’’ (Table 1). Several sources were rejected for use of the term ‘‘family’’ in an irrelevant context, for example articles about genetics. The majority of articles reviewed concerned family members of patients of one medical specialty or speci?c disease, and were often limited to one particular family member, for example partners. No information was found regarding the more general impact of disease on families of patients over more than one specialty. However, many of the studies revealed similar ways that family members of patients were impacted by disease. In this review, only original articles were included.Table 2 summarises the studies which included a control group. Definition of Family Greater patient 2946 Secondary impact 165 Impact on partner 113 Chronic disease þ family 38 used. ‘‘Impact on family’’ was combined with several common medical specialties. Each abstract identi?ed was read to determine the type of study and its relevance. Where appropriate, the full paper was read in detail. To be included, a source had to be an original paper concerned with the impact of any illness or disability on the family of patients. Two measures of possible relevance to the impact of disease on family members of patients were identi?ed. The term ‘‘family’’ is di?cult to de?ne. The mid 20th century concept of family, with heterosexual parents and o?spring living under the same roof is now seldom used, and many authors now consciously use a wider de?nition of family. The dynamics between family members are constantly evolving and there is evidence of many diverse family types in modern western European society33. Poston et al.34 de?ne family as ‘‘people who think of themselves as part of the family, whether by blood or marriage or not, and who support and care for each other on a regular basis’’, and this de?nition is thought to acknowledge the diverse social arrangements that may constitute a family.35 In other studies, the terms ‘‘family’’, ‘‘informal carer’’, and ‘‘carer’’ are used interchangeably.20,36 For this review, we have taken a broad view of the term family and accepted each authors interpretation as valid. Where studies refer to carers, it was ensured that this related to family carers. Key impact areas Most chronic diseases have similar e?ects on family members including psychological and emotional functioning, disruption of leisure activities, e?ect on Golics et al. 401 Table 2. Summary of studies that included a control group. Reference number Family member group Control Summary 2 Parents of children diagnosed with cancer, diabetes or epilepsy. Parents of healthy children. Parents of children diagnosed with cancer, diabetes or epilepsy reported significantly lower quality of life compared with healthy controls. However they were also more satisfied with their family situation compared with healthy controls. 9 Families of children with atopic dermatitis. Families of healthy children. Families of children with atopic dermatitis have a lower family function level than families of healthy controls. 12 Male and female partners of cancer patients. Healthy couples. Female cancer patients and female partners of patients perceived more psychological distress and a lower quality of life than women in healthy couples. Psychological distress and quality of life did not differ between male partners of patients and their healthy controls. 51 Family members of overactive bladder (OAB) patients. Family members of healthy individuals. The OAB-FIM discriminated between OAB and control family members. OAB family members demonstrated significant impact on quality of life. interpersonal relationships, and ?nancial resources (Figure 1). However there may be some aspects which attain dominance in one particular disease as compared to other diseases. Several common themes were identi?ed from the studies reviewed. Leisure and social impact were reported separately in much of the literature, and hence are reported as separate themes. Further examples of less common themes mentioned are summarised in Table 3. There may be gender di?erences in responses to caregiving,16,19,41,42 although there was no di?erence in the well-being of partners of rheumatoid arthritis patients, based on the gender of the patient.43 It is not just the parents and partners who are a?ected emotionally by a relative’s disease.29 For example, siblings of children with pervasive developmental disorder su?ered from ‘‘signi?cant adjustment problems’’ compared to a control group.24 Emotional impact Financial impact Family members su?er greatly from the emotional e?ects of living with, and caring for, a relative with a disease, with the impact of some diseases being felt by every member of the family.37 Emotional impact was the most common topic discussed in the literature. The psychological distress felt by family members often results from their feelings of helplessness and lack of control.3,38 Many di?erent emotions are mentioned by family members; guilt, anger, worry, upset, frustration, embarrassment, despair, loss, relief. Each emotion a?ects family members in di?erent ways and to di?erent extents, often depending on the disease severity of the patient,39,40 and the period of time that has passed since the diagnosis.13 Female partners of cancer patients had higher psychological distress than male partners.12 However, no signi?cant di?erence was seen between genders when measuring overall quality of life of relatives. One of the greatest burdens on family members of patients is the ?nancial cost to the family.44 This can include treatment costs, transport to appointments, the cost of hiring a carer, and adapting their home environment. In a Canadian study,45 families spent on average C$624 per month on care or support for the patient with an intellectual disability; many described not having any money left at the end of the month. In a similar USA study, the ?nancial impact on families caring for patients with dementia varied from US$3630 to US$17700 depending on the severity of the patient’s dementia.46 The ?nancial strains felt by family members of patients often lead to stress and worry. Family members of dermatology patients increase their working hours in order to support their family ?nancially, and many need state bene?ts to cover the extra costs which may lead to compromises for other family 402 Journal of the Royal Society of Medicine 106(10) Figure 1. A man whose chronic disease is affecting the lives of his family. Table 3. Examples of other ways disease impacts on the lives of family members. Affecting sleep2,4,6,9,21,48,58,62,67 Concerns about medical treatment2,4,62,68 Altered food choices2,6,69 Using religion, spiritual and cultural beliefs to cope2,11,13,46,59 Feeling obliged to give care41 Concerns about receiving information about the disease and understanding13,21,37,62 Needing support from others15,46,70 Limited freedom48 Worrying about death of the patient17,21,62 members.3 When caring for a child with cerebral palsy, providing even the basic necessities put ?nancial pressure on the parents,47 and accessing funding was also challenging, which again increased stress and emotional e?ects. The di?culties involved in accessing funding are greater in low income families, who often receive minimal support and face greater problems with social functioning and relationships.48 Impact on family relationships Family members of patients experience a negative e?ect on their family relationships, both between the relative and the patient, and between other members of the family as a result of the patient’s illness. Poor family relationships do not bode well for chronic disease management regardless of the disease and often family members ?nd relationships di?cult as they do not know how to emotionally support each other.49 Family members of patients with multiple sclerosis reported negative e?ects on their relationships with each other, resulting in arguments, tension, and a lack of understanding of each other’s feelings.37 In particular, relatives struggle to deal with patients whose beliefs, outlook, and behaviour have altered as a consequence of their disease. There was little time for relationships between other members of the family. For example, Golics et al.50 found that 38% of adolescents with dermatological conditions felt that their family relationships had been a?ected as a result of their condition. Golics et al. Partners of patients experience a negative e?ect on their sex lives as a result of the patient’s disease,often as a result of the patient’s symptoms51 or not having time to spend together as a couple due to another family member’s illness.3 It can lead to friction between couples, and in some cases can lead to the breakdown of relationships, or partners seeking sexual encounters outside the relationship.3,6 However, in some families relationships can grow stronger,52 as the family members work together to help each other and become more closely knit. In families with a child with an intellectual disability, the majority were taking the initiative to maintain good family relations, and engaging in family activities to encourage this.45 An increase in family closeness was also found in families of cancer survivors; one husband of a survivor said ‘‘I look at life di?erently after that. I feel much closer to her.’’15 Education and work Living with, or caring for, a relative with a disease can have a large impact on the education and careers of family members. This could include disruption of school work in siblings or children of the patients, or the employment of adults being a?ected and the burden of care placed upon them. Some families of children with disabilities45 felt that some of their family members would not be able to attend work or school in the near future. One family member is quoted: ‘‘The unpredictable natures of our children’s health and lives does not often ?t with a typical, progressive work pro?le’’.45 In eight of the 34 families studied, one or both parents had given up an education or career to care for their child with a disability. 40% of family members of dermatology patients felt that their employment was a?ected by their family member’s skin condition.3 Reasons included needing to look after the patient, attendinghospital appointments, and emotional e?ects a?ecting work. Looking after a patient with cancer can also have a huge impact on a family member’s work on a day-to-day basis.20 Family member carers were reporting late for work, missing work, spending time at work talking on the telephone to their relative and some left work due to their carer responsibilities. Leisure time An important part of family QoL is family members being able to participate in the hobbies they enjoy.34 The barriers that prevent families from taking advantage of leisure opportunities45 link into other domains of family quality of life, including lack of time due to the responsibilities of care, limited ?nance, and lack 403 of support available. However, encouragingly, it has been shown that when family members do take the initiative to plan leisure activities, they usually work out positively, despite the restrictions due to the relative’s illness, and families show high satisfaction with this achievement.45 Family members also ?nd di?culty in taking family holidays, often depending on the disease state of their relative. Problems with ?nding suitable accommodation can make holiday planning ‘‘awkward’’.47 Relatives of patients with skin diseases described limitations of holiday planning, for example not wanting to swim together at the beach or their relative having to wear certain types of clothes.4 Social impact The burden on family members caring for a person with a disease has a drastic e?ect on their social lives.3,4,34,47 Mothers caring for disabled children felt that their lives were so di?erent from their friends and felt that they could only contribute to depressing conversations, and therefore lost friends as a result.47 Other family members described friends ‘‘drifting away’’, as they do not understand the family situation.37 A large number of individuals with a relative suffering from a skin disease complained of social disruption.4 Conditions which result in visible signs of disease (for example basal cell carcinoma on the face or chronic obstructive pulmonary disease requiring oxygen therapy) may have a greater e?ect on the social lives of patients and their relatives, for fear of strangers’ reactions to their visible condition. Mothers of adolescent patients su?ering from severe chronic pain reported more restrictions in their social life than mothers of children with less severe chronic pain and the authors suggest that this could be directly related to the illness.53 Instruments to measure family quality of life Several studies have lead to the development of instruments designed to measure the impact of disease on families of patients.3,26,54,55 However, these instruments are mostly disease or specialty speci?c, and can therefore only be used to assess the quality of life of the family of a particular group of patients. The Family Dermatology Life Quality Index(FDLQI) is a ten-item questionnaire designed to measure the quality of life of family members of dermatology patients.56 This validated instrument contains items such as ‘‘Over the last month how much emotional distress have you experienced due to your relative/partner’s skin disease (e.g. worry, 25 9 parts, total of 49 items, many include multiple parts 44 Family members of children with a disability Main caregivers of people with intellectual or developmental disabilities Caregivers of patients with any disease Beach Center Family Quality of Life Scale54 Family Quality of L … Purchase answer to see full attachment Student has agreed that all tutoring, explanations, and answers provided by the tutor will be used to help in the learning process and in accordance with Studypool’s honor code & terms of service . Get a 10 % discount on an order above $ 100 Use the following coupon code : NURSING10

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