patientupplevelser
reviderad 2014
SBU:s granskningsmall bygger på tidigare publicerat material [1,2], men har bearbetats och kompletterats för att passa SBU:s arbete.
Författare: ____________________ År: _________ Artikelnummer: __________
Anvisningar:
• Alternativet ”oklart” används när uppgiften inte går att få fram från texten. • Alternativet ”ej tillämpligt” väljs när frågan inte är relevant.
Kommentarer (urval, patientkarakteristika, kontext etc):
1. Syfte Ja Nej Oklart Ej tillämpl
a) Utgår studien från en väldefinierad problemformulering/frågeställning?
Kommentarer (syfte, problemformulering, frågeställning etc):
2. Urval Ja Nej Oklart Ej tillämpl
a) Är urvalet relevant?
b) Är urvalsförfarandet tydligt beskrivet? c) Är kontexten tydligt beskriven? d) Finns relevant etiskt resonemang?
e) Är relationen forskare/urval tydligt beskriven?
Total bedömning av studiekvalitet:
mall för kvalitetsgranskning av studier med kvalitativ forskningsmetodik 5:1
e) Genereras hypotes/teori/modell? f) Är resultatet överförbart till ett
liknande sammanhang (kontext)?
g) Är resultatet överförbart till ett annat sammanhang (kontext)?
Kommentarer (resultatens tydlighet, tillräcklighet etc):
3. Datainsamling Ja Nej Oklart Ej tillämpl
a) Är datainsamlingen tydligt beskriven? b) Är datainsamlingen relevant?
c) Råder datamättnad?
d) Har forskaren hanterat sin egen förförståelse i relation till datainsamlingen?
Kommentarer (datainsamling, datamättnad etc):
4. Analys Ja Nej Oklart Ej tillämpl
a) Är analysen tydligt beskriven?
b) Är analysförfarandet relevant i relation till datainsamlingsmetoden?
c) Råder analysmättnad?
d) Har forskaren hanterat sin egen förförståelse i relation till analysen? Kommentarer (analys, analysmättnad etc):
. Resultat
5 Ja Nej Oklart Ej tillämpl
a) Är resultatet logiskt? b) Är resultatet begripligt? c) Är resultatet tydligt beskrivet? d) Redovisas resultatet i förhållande
BILAGA 3.
Strukturerad resultatredovisning av valda artiklar med kategorier och underkategorier. Kategorier→ Fysiska förändringar Nära relationer Känslomässiga upplevelser Sjukvårds- personalens roll Under-
kategorier → a Inf b GI c Lymf Stöd d Info e Sex f Fam g Räd h Nytt Artikel och kvalitet ↓ Afiyanti & Milanti 2013 Medel x x Barlow m.fl. 2013 Medel x x Clemmens m.fl. 2008 Hög x x x x x x x Hagan & Donovan 2013 Medel x x x Molassiotis m.fl. 2002 Hög x x x Roberts & Clarke 2009 Hög x x x x x Sekse m.fl. 2009 Hög x x x x x Sekse m.fl. 2010 Hög x x x x x x Sekse m.fl. 2013 Hög x x x x x Sekse m.fl. 2014 Hög x x x x Vermeer m.fl. 2015 Hög x x x x x x Zeng m.fl. 2011 Hög x x x x x
a Infertilitet; b Gastrointestinalabesvär; c Lymfödem; d Information; e Sexualitet; f Familj och Familjeliv; g Rädsla, oro och ångest; h Nytt perspektiv
BILAGA 4. Artikelmatriser. Author title, journal, country, year Aim Method/ Participants
Main findings Study quality, Comments
Afiyanti and Milanti
Physical sexual and intimate relationship concerns among Indonesian cervical cancer survivors: A phenomenological study
Nursing and health Sciences
Indonesia 2012
To explore physical sexual concerns and their impact on the intimate partner relationships experienced by cervical cancer survivors. Descriptive phenomenology based on Hussler’s philosophy. Open-ended, in-depth interviews analysed through data coding and then examined for emerging themes. 13 women, aged between 38-48 years, who had been cervical cancer survivors for at least one year. Chosen through purposive sampling from follow up care clinic in an outpatient radiotherapy unit.
Two main themes: Physical sexual concerns following cervical treatment: Symptoms of red spotting and vaginal discharge after sexual intercourse induced fear and anxiety of relapse.
The impact of reduced sexual desire on intimate partner: Most participants tried to avoid having sexual
intercourse with their spouse. The women felt forced to fulfill their husband’s sexual needs.
Average
No mention of saturation of data.
Does not mention drop- out rates or how many women declined. Study conducted in Indonesia. Cultural differences could have affected the results which makes the study less transferable.
Author title, journal, country, year
Aim Method/ Participants
Main findings Study quality, Comments
Barlow et al. Sexuality and body image following treatment for early stage vulvar cancer: a qualitative study Journal of Advanced Nursing Australia 2014 To describe women's experiences of sexuality and body image following treatment for early-stage vulvar cancer. Qualitative
interview study based on interpretive
phenomenology. Semi- structured interviews analysed through a thematic approach. 10 women, aged between 37-76 years, who had undergone surgery for early stage vulvar cancer was included in study. 41 women were identified as eligible in department database. 21 women chosen by purposive sampling was sent an invitation letter. 10 women responded.
Two main themes:
Sexuality: The women were scared that sexual intercourse would be painful and that the scar on the vulva would split open. Most women
experienced a change in sensation over the scar on the vulva and described it as numbness, an odd feeling. Body image: Women
experienced feelings of being less feminine and less
satisfied with their physical appearance after the surgery. Women who had had lymph nodes removed worried about developing lymph edema. The women with lymph edema tried to cover up their swollen limbs for the comfort of others. Average No mention of saturation of data. Small number of participants. Data analysis well described
Author title, journal, country, year
Aim Method/ Participants
Main findings Study quality, Comments Clemmens et al. Cervical cancer: patterns of long- term survival. Oncology nursing Forum USA 2008 To describe the quality of life (QOL) experienced by long-term survivors of cervical cancer and the factors that promoted their adaptation.
Qualitative study design conducted through semi- structured interviews with open ended questions over the phone or in person. Data was analysed through qualitative content
analysis and core consistencies and
meanings were identified. 19 women, aged between 29-64 years, who had been diagnosed with cervical cancer 7-28 years prior were purposely selected based on the principles of intense sampling. The women had previously taken part in a larger quantitative ‘quality of life’ study and had
consented to be contacted for future studies.
3 patterns were identified: Moving on: Even though most women reported that they had moved on from their cancer experience many feared recurrence.
Renewed appreciation of life: Nine women described a new perspective on life which meant that they appreciated life and relations more. Ongoing struggles: Six participants struggled with long-term side-effect which included severe
gastrointestinal issues, difficulty eating and lymph edema.
High
Author title, journal, country, year
Aim Method/ Participants
Main findings Study quality, Comments Hagan and Donovan Ovarian cancer survivors’ experiences of self-advocacy: A focus group study Oncology nursing Forum USA 2013 To explore ovarian cancer survivors' experiences of self-advocacy in symptom management. Phenomenological study. Data was gathered through focus groups combined with in-depth interviews with 5 participants. Constant comparison approach was used for analysis.
Participants were identified through an ongoing randomized clinical trial. 13 women, aged between 26-69 years, with a history of ovarian cancer was included in the study.
Knowing who I am and keeping my psyche intact: To be able to manage symptoms and side-effects the women felt they needed a strong will and to keep a positive
attitude. Women described being on the tipping point, always close to fall apart and have a breakdown.
Knowing what I need and fighting for it: The women learnt how to filter and manage information and advice from healthcare workers, friends and the internet and to take advantage of support networks which provided invaluable support and advice on how to manage side-effects.
Average
Does not mention drop- out rates or how many women declined.
No ethical considerations reported.
Data from focus groups can be biased as a result of pressure to confirm to group norms.
Author title, journal, country, year
Aim Method/ Participants
Main findings Study quality, Comments
Molassiotis et al. Life after cancer: adaption issues faced by Chinese gynaecological cancer survivors in Hong Kong. Psycho- Oncology China 2002 To evaluate the adaption issues face by gynaecological cancer survivors within their cultural context. Phenomenological study conducted through in-depth interviews. Condensing method was used for analysis.
18 women, aged between 21-64 years, who had undergone treatment for gynecological cancer 2-16 years previously. Participants were selected through purposeful sampling. 6 themes:
Positive revival: The women realised how precious life is.
Marital relationship difficulties: Many women reported that their husbands had extramarital affairs.
Planning for the future: Women worried about their children and
planned for the future in case the cancer recurred.
Sexuality and femininity difficulties: All women reported that their sex life had been greatly affected due to physical discomfort during intercourse.
Fertility issues: Grief over being unable to have children.
Discomfort- weakness and pain: Physical weakness and pain that affected daily living.
High
Study conducted in China. Cultural differences could have affected the results which makes the study less transferable. Other criteria were met.
Author title, journal, country, year
Aim Method/ Participants
Main findings Study quality, Comments Roberts and Clarke Future disorientation following gynaecological cancer: women’s conceptualization of risk after a life threatening illness.
Health, risk & Society
United Kingdom 2009
To explore the lived experience of gynaecological cancer from women’s perspective. To gain better understanding of the impact of gynaecological cancer on the domains of quality of life and sexuality for women following major pelvic surgery. To identify areas in which healthcare practice may be developed in order to support the adaptation process for women during their recovery. Unstructured interviews analysed through Grounded Theory methodology. 20 women, 12 months or more post surgical treatment for
gynecologic cancer, were selected by theoretical sampling. Women were offered information about the study at an out- patient appointment at a gynecological cancer centre. Women had to subsequently contact the department if they wanted to participate.
Two main themes:
The search for meaning: Exploring the influence of emergence: The women searched for meaning in their present situation and struggled to understand why they had developed cancer. The childless women’s main worry was infertility.
Living with risk: reclaiming the past for future orientation: Many women lived with the fear of recurrence. This was extremely burdensome for the women who were single parents.
High Method described well. No discussion about transferability of the findings. All other criteria were met.
Author title, journal, country, year
Aim Method/ Participants
Main findings Study quality, Comments Sekse et al. Cancer as a life- changing process: Women´s experiences five years after treatment for gynaecological cancer. International Journal of Qualitative Studies on Health and Wellbeing Norway 2009 To gain a deeper understanding of living beyond gynecological cancer. A qualitative study with a phenomenological perspective. Data was gathered through 32 in- depth interviews with 16 women and analysed through a
phenomenological based condensing method. 31 women, from an out- patient gynecological follow-up clinic, received an invitation by post. Out of these, 16 women, aged between 39-66 years, who were 5 or more years post cancer
treatment, were recruited.
1 structure that consists of 2 interrelated constituents:
Cancer as a life changing process: The women lived with profound life changes after the cancer that was both demanding and enriching. Living between life courage and life anxiety: The women experienced joy and gratitude for life but also feared recurrence and felt deeply anxious about this possibility.
Living between existential
loneliness and relational caring: The women felt lonely in their cancer experience but valued relationships with family and friends highly. The women wanted more commitment, involvement and empathy from healthcare staff.
High
All criteria were met.
Detailed
description of the analysis.
Author title, journal, country, year
Aim Method/ Participants
Main findings Study quality, Comments Sekse et al. Life beyond cancer: women’s experiences 5 years after treatment for gynaecological cancer. Scandinavian journal of caring sciences Norway 2010 To gain a deeper understanding of the lived experience of long-term cancer survivors and how they experienced cancer care.
A phenomenological- hermeneutic approach with in-depth
interviews. Data was analysed using phenomenological meaning condensation. 31 women, from an out- patient gynecological follow-up clinic, received an invitation by post. Out of these, 16 women, aged between 39-66 years, who were 5 or more years post cancer
treatment, were recruited.
3 core themes:
Living with tension between personal growth
and fear of recurrence: Gratitude for being alive and personal growth was experienced alongside fear of
recurrence.
Living in a changed female body: Women reported issues related to infertility, sexuality and menopause. Feeling left alone- not receiving enough
information and guidance after treatment: The women wanted more information about the long-term effects of the treatments and wished healthcare staff would have showed more empathy and given them time to discuss sensitive subjects at appointments.
High
All criteria were met.
Author title, journal, country, year
Aim Method/ Participants
Main findings Study quality, Comments Sekse et al. Living in a changed female body after gynecological cancer. Health care of women international Norway 2013
To explore the lived experiences of women who have survive
gynecological cancer and to
elaborate on how living in a changed female body after gynecological cancer is experienced 5 to 6 years after treatment. A phenomenological- hermeneutic approach which was both descriptive and
interpretive with in-depth interviews. Data was analysed using phenomenological meaning condensation. 31 women, from an out- patient gynecological follow-up clinic, received an invitation by post. Out of these, 16 women, aged between 39-66 years, who were 5 or more years post cancer
treatment, were recruited.
4 core themes:
The feeling of a void in the womb: The women experienced something missing in their body after surgery. Changes in body temperature: Regardless of whether the women had been menopausal at the time of treatment they now experienced difficulty in regulating their body temperature.
A changed sex life: Discomfort and lack of sexual desire influenced intimate relationships negatively. The healed, but vulnerable and uncertain body-
5 years late: The women
experienced fear of recurrence and lack of support from healthcare personnel.
High
All criteria were met.
Author title, journal, country, year
Aim Method/
Participants Main findings Study quality, Comments
Sekse et al. Education and counselling group intervention for women treated for gynaecological cancer: does it help? Scandinavian Journal of Caring Sciences Norway 2014 To provide insight into women’s own lived experiences of participating in an education and counseling group intervention after curative treatment for gynaecological cancer. A phenomenological- hermeneutic approach was used which was both descriptive and interpretive. Data was analysed using
phenomenological meaning condensation. Data gathered through focus group interviews. 17 women from an education and counseling group intervention for gynecological cancer survivors were asked to participate. All 17 women, aged 20 to 80 years, had completed gynecological cancer treatment within the last two years.
3 core themes:
A community of understanding and belonging: The women found understanding and recognition from the other women in the group.
Living with the changes and scars of cancer: The cancer diagnosis had been a shattering and existential experience and the women feared recurrence. The confirmation of bodily knowledge through education and counseling: The group intervention had helped many women learn more about the cancer, its side-effects and impact on everyday life. The women had varied experiences in regards to the support and information given by
High
All criteria were met. Data from focus groups can be biased as a result of pressure to confirm to group norms.
Author title, journal, country, year
Aim Method/ Participants
Main findings Study quality, Comments Vermeer et al. Cervical cancer Survivors’ and partners’ experiences with sexual dysfunction and psychosexual support. Support care cancer Netherlands 2015 To assess experiences with sexual dysfunctions, psychosexual support and psychosexual healthcare needs among cervical cancer survivors and their partners.
Qualitative study with face- to face interviews. Data was analysed with NVivo using a framework approach and then coded. 54 women from a cross- sectional questionnaire study who had agreed to participate in future studies were asked to participate. Out of these 30 women, aged 34-68 years, were recruited through purposive sampling.
3 main themes:
Experiences with respect to sexual dysfunctions: Infertility had led to feelings of grief. The women’s sexuality had been affected negatively with decreased libido and pain during intercourse.
Experiences with information and care provision: Women reported having received inadequate information from healthcare staff regarding the cancer treatments effect on sexuality.
Healthcare needs and attitudes towards modes of intervention delivery: Women wanted practical advise regarding their sexual complaints and for the healthcare staff to involve their partner.
High
All criteria were met. Large sample size.
Author title, journal, country, year
Aim Method/ Participants
Main findings Study quality, Comments Zeng et al. Life after cervical cancer: Quality of life among Chinese women. Nursing and health sciences China 2011 To explore the meaning of quality of life among Chinese survivors of cervical cancer and the impacts of cervical cancer survivorship on these women’s quality of life.
Descriptive, exploratory design using the
Quality of life- model of Ferrell et al. (1997)*. Data gathered through a written form with open- ended questions and analysed through qualitative content analysis.
Through purposive sampling strategy 41 women from a tumor hospital in China were asked to participate. Out of these 35 women responded and was included in the study.
Meaning of “quality of life”: The women were
asked what quality of life meant to them. Women responded that it meant to be in good health and free of disease, to have good relationships and a harmonious sexual relationship.
Impact of cervical cancer survivorship on the Chinese women’s quality of life: The women reported negative impacts on physical and psychological well-being including loss of hair, poor sleep, edema, premature menopause, fear of recurrence, feelings of being isolated, being a burden to their family and disruptions to their sex life.
High
Study conducted in China. Cultural
differences could have affected the results which makes the study less transferable.
Written responses lack the interaction between the interviewer and participant and
spontaneous responses that are obtained in face to face interviews are not obtained.
*Ferrell B R, Grant M M, Funk B, Otis-Green S, Garcia N, (1997). Quality of life in breast cancer survivors as identified by focus groups. Psycho- oncology, 6, 13-23.